At first glance, the fields of rehabilitation medicine and palliative medicine might seem to be diametrically opposed, but, in fact, they have much in common. Both fields provide whole-person care to patients and their families through interdisciplinary teams. Central to palliative care is the development of an individualized patient care plan that focuses attention to pain and symptom control and to maximizing the patient’s function, independence, and quality of life. The patient’s goals of care direct the plan of care, with the plan modified by change in the patient’s condition over the course of time. Palliative care should be part of the treatment plan for every patient of any age who has a serious illness, no matter the stage of illness, and rehabilitation medicine providers often figure prominently in a patient’s early palliative care plan. Figure 81–1 demonstrates the role of palliative care through the course of serious illness.¹

Compared to usual preventive and interventional medical care, palliative care focuses on symptom management and quality of life more than curative or disease-modulating measures, although palliative care should be started even while patients continue in active treatment against serious diseases. Dr. Balfour Mount of Quebec is credited with the first use of the term palliative care.² The term comes from the Latin root palliare (“to cover” or “to cloak”).³ The World Health Organization’s definition of palliative care emphasizes patient-centered, holistic, interdisciplinary care of physical, emotional, and psychological distress for patients and their families (Table 81–1).⁴

Many people incorrectly associate palliative care only with care for those imminently dying. Additionally, functional restoration and rehabilitative services are integral to a good palliative care plan. Research studies have found, however, that early palliative care integrated with usual medical care does not shorten life. Rather, patients receiving early integrated palliative care may even have longer survival than those only receiving usual medical care.^5–7

With palliative care, patients also report improved symptom control and have fewer hospitalizations. Palliative care, including hospice care, therefore has the potential not only to improve patient care but also to decrease overall health care costs associated with care.^8–15

Additionally, care by a comprehensive palliative care team has been found to increase family satisfaction with care, and to decrease family post-traumatic stress and depression associated with chronic illness and patient death.^16,17 The need for comprehensive palliative care involving all disciplines, clarifying patient and family goals, delivered over several sessions, and actively managing the patient’s symptoms is important. A recent study found that a one-time palliative care consult without interdisciplinary support did not decrease depression or anxiety scores but actually increased post-traumatic stress scores for family members.¹⁸

Palliative care has no time limits other than those that might be imposed by private insurance. In the United States, it is subject to patient copayments with Medicare and private insurance. Availability of palliative care services outside the United States varies from country to country. The majority of European Union Member States have general government and social security funds as major sources for health care coverage, which typically includes palliative care services. Out-of-pocket expenses to patients and private insurance provide variable amounts of coverage.¹⁹

Of course, palliative care is often most needed when patients are facing impending death. Hospice care is a special type of palliative care provided to a terminally-ill patient and their family. In the United States, such care is available when the patient has an expected prognosis of 6 months or less if the illness runs its usual course.²⁰ Hospice care seeks neither to prolong life nor to hasten death. The term hospice, as does the word hospitality, comes from the Latin root hospes, meaning guest, host, or stranger.²¹ Care for the sick and dying has always been provided, first and foremost, by family and friends of those who are ill. During the Middle Ages, religious orders increasingly provided care to travelers along pilgrimage routes. As many pilgrims were making journeys to shrines seeking help or cure from illnesses, religious orders provided care for those too ill to continue their journeys. Religious orders also responded to epidemics and in times of war. In 1090, during a siege of Jerusalem, much of the population left the city, leaving behind the rector of Saint John the Almoner to stay to care for the wounded.²² When the Bubonic Plague spread from China to Western Europe in 1347, religious orders were often the only ones who would care for plague victims, despite a high mortality rate among the caregivers.²³ A gradual proliferation of institutionalized care for the sick and dying ensued. From the nineteenth century to the early twentieth century, special places dedicated to the care for the dying were opened in France, Ireland, and throughout the eastern United States. Throughout the nineteenth and twentieth centuries, increasing numbers of hospitals, infirmaries, and almshouses, along with an expanding scientific medical knowledge base, led to the trend of “medicalizing” dying in more-industrialized countries: death no longer occurred at home with the patient surrounded by family. From 1937 to 1945, the rate of death in hospitals and allied institutions rose from 36.7% to 46.3%.²⁴ By the latter twentieth century, it was estimated between 70% and 80% of people dying in the United States died in hospitals or nursing homes.^25–27 Other industrialized countries show similar trends.^28–30

The birth of the modern hospice movement is traced to Dame Cicely Saunders of the United Kingdom. Saunders served as a nurse during World War II and then entered medical school at age 33. She worked at St. Thomas’ Hospital and studied pain management at St. Joseph’s Hospice. Saunders believed that the dying was not offered sufficient care in hospitals. Often, patients and families were told that “there was nothing more that could be done.” She refused to accept that statement. She established St. Christopher’s Hospice facility in 1967, always noting that “there is so much more to be done.” Its first home care team was established in 1969 to take its philosophy of care out into the community.³¹

Saunders is credited with the concept of treating “total pain,” with the identification that a team was required to treat all the different aspects of pain and suffering accompanying terminal illness, whether physical, mental, emotional, or spiritual. She is also credited with teaching that constant pain requires constant control. It was at St. Christopher’s that research on the effectiveness of morphine for pain control was carried out.³² Saunders summed up hospice care in this way: “You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”³³ For her work in promoting excellence in end-of-life care, she was made a Dame of the British Empire in 1979.

Saunders also served as an inspiration for Florence Wald, who is credited with bringing the modern hospice era to the United States. Wald studied physiology and sociology before earning her Master’s in Nursing from Yale in 1941 and later a Master’s in Mental Health Nursing in 1956. In 1958, she became Dean of the School of Nursing at Yale. Cicely Saunders served as visiting faculty at Yale in 1965, and Wald subsequently took a sabbatical to St. Christopher’s Hospice in 1968. Wald then established Hospice, Inc. in 1971 and later founded Connecticut Hospice in 1974.³⁴

Around that same time, Dr. Elisabeth Kübler Ross, a Swiss-born psychiatrist most well-known for her theory of stages of grief, published On Death and Dying in 1969. She testified to the Senate Commission on Aging about the experience of death in the United States in 1972, noting that institutionalizing the dying as part of our “death-denying” society served only to shield others from confronting their own mortality. She advocated for visiting nurses and more help with home care to give families “spiritual, emotional, and financial help in order to facilitate the final care in the home.”³⁵ Initial attempts to secure federal funding for hospice services were unsuccessful in 1974, however. It would be nearly a decade before funding for hospice was approved in 1982 and made a permanent Medicare benefit in 1986.³⁶

Components

The American Academy of Family Physicians defined palliative care in this way: “Palliative care serves patients of all ages who have a chronic illness, condition, or injury that adversely affects daily functioning or reduces life expectancy. This care is given by an interdisciplinary team that encompasses several fields and may include volunteer coordinators, bereavement coordinators, chaplains, psychologists, pharmacists, nursing assistants, home attendants, dietitians, therapists (e.g., physical, occupational, art, play, child life, music), case managers, and trained volunteers. In addition to the physical aspects of illness, palliative care addresses psychological, spiritual, and practical matters. The unit of care comprises the patient and their family as defined by the patient or a surrogate; family members are not necessarily related to the patient but have a significant relationship and provide support.”³⁷ Palliative care can be provided by primary, secondary, or tertiary providers. Primary palliative care consists of basic skills in identifying serious or terminal illness and providing appropriate symptom management and referrals for further care. Secondary palliative care refers to palliative medicine specialists who provide consultative services and advanced palliative care services. Tertiary palliative care is typically practiced in academic or specialty medical centers where the most complex care is practiced, but also often researched and taught.³⁸ The subspecialty board certification examination for Hospice and Palliative Medicine (HPM) through the American Board of Medical Specialties (ABMS) requires a 1-year post-residency fellowship for eligibility. Table 81–2 lists the ten sponsoring ABMS sponsoring boards.³⁹

Ideally, all primary care providers would be skilled in providing basic palliative care services: by providing symptom management, discussing advance care planning and helping patients implement advance directives, discussing prognosis and treatment options, and in helping in decision points regarding change of care. However, most physicians who have been in practice for many decades did not receive specific instruction in having end-of-life discussions during their training. Even those currently in training report not being prepared for or comfortable with such discussions.^40–42 There are programs available now to help clinicians learn to have difficult conversations with patients and families. The Project to Educate Physicians on End-of-life Care (EPEC; http://www.epec.net) came from the Institute for Ethics at the American Medical Association, supported by the Robert Woods Johnson Foundation, to teach primary palliative care topics to non-HPM practitioners. There are now specialty modules also available for caregivers, emergency medicine, long-term care, oncology, veterans, and pediatrics. Vital Talk (http://vitaltalk.org/) and ePrognosis (http://eprognosis.ucsf.edu/communication) are examples of programs that offer online training in some of these difficult topics. The American Academy of Hospice and Palliative Medicine (http://aahpm.org/education) also offers various self-study programs in addition to yearly continuing educational sessions at its Annual Assembly and other programs held across the United States. The Institute for Healthcare Improvement began The Conversation Project (http://theconversationproject.org) in 2010, providing helpful ways for people to begin conversations with loved ones about their end-of-life health care preferences. They have developed several conversations starter kits, including special kits for patients with dementia and children with serious illness.^43–46 The Center to Advance Palliative Care (https://www.capc.org) and the National Hospice and Palliative Care Organization (https://www.nhpco.org) have additional resources for providers. Local hospices may also have educational materials that help in explaining common signs and symptoms or which address issues such as artificial hydration and nutrition. However, proficiency in end-of-life conversations requires practice; courses alone are not substitutes for actual conversations with patients and families. Other programs that teach improved communication skills in general may also be helpful.

In the United States, the National Consensus Project studied five major US palliative care programs to identify domains of quality care. Table 81–3 shows the key elements identified.⁴⁷

Care Settings

Palliative care consultation teams are becoming more available in acute care hospitals in higher-income countries, with the teams helping provide symptom management and also helping patients to identify what goals of care best meet their needs and preferences. The Center to Advance Palliative Care 2015 Report Card shows a continued increase in the number of hospital palliative care teams in the United States: 67% of US hospitals with 50 or more beds report palliative care teams, up from 53% in 2008. The number of states with A grades (defined as more than 80% of the state’s hospitals reporting a palliative care team) also increased, from 3% in 2008 to 17% in 2015, although availability still varies geographically. For the first time in 2015, no state had a grade of F (defined as less than 20% of a state’s hospitals reporting a palliative care program). Gaps still remain, though. The overall grade for the United States in 2015 was B (defined as 61%–80% of hospitals reporting palliative care programs), unchanged from 2011.⁴⁸

Palliative care services may also be integrated into specialty clinics, such as oncology, pulmonary, or cardiac programs. Some home health agencies and hospices provide palliative home health services, although availability of such programs varies widely by region. However, there is a serious shortage of hospice and palliative medicine (HPM) providers for the current US population, and the shortage is anticipated to worsen with the increasing aged population. Twenty six percent of the US population are “Baby Boomers”; as of the start of 2011, an average, or 10,000 of them, turn 65 years old daily and will continue to do so through 2030.⁴⁹ There is a gap of 6,000 to 18,000 palliative medicine physicians needed to reach mature staffing levels based upon those population estimates.⁵⁰

Hospice care may be provided in homes, residential nursing facilities, assisted living apartments, or in inpatient hospice units or free-standing facilities (see Fig. 81–2). The US hospice movement developed as primarily a home-based model of care. It has only been in recent years in the United States that larger numbers of inpatient hospice beds have sprung up to provide care for those whose symptoms cannot be adequately controlled in the community. By 2013, it was estimated that one in three hospice agencies operated a dedicated inpatient hospice unit (possibly on a hospital campus) or freestanding facility, up from one in five in 2011.^51,52

Of course, hospice availability and how hospice care is provided vary significantly from country to country. In 2014, there were an estimated 6,100 hospices in the United States; hospices are present in each of the 50 states, the District of Columbia, and the territories of the US Virgin Islands, Guam, and Puerto Rico. Those hospices served around 1.7 million patients in 2014. Even with such availability of services, however, the US hospice system is still plagued by referrals very late in the course of patient illness: in 2014, the median (50th percentile) length of service was only 17.4 days and the average length of service was 71.3 days.⁵³

Comparison of services between the United States and other world regions is somewhat difficult as hospice care in the United States is provided on a time-limited basis that may not apply to palliative care provision in other countries (see Medicare Hospice Benefit later on in this chapter). Non-government organizations (NGOs) and religious groups may also provide palliative care in some areas outside the United States. Different world regions also differ from one another in what statistics are gathered and how they are reported. Patient diagnoses also may vary significantly from country to country. For example, in the United States, hospice care for patients with human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS) is a minor percentage of patient care. However, such is not the same worldwide. Sub-Saharan Africa is the most affected region for HIV/AIDS, with 25.8 million people living with HIV in 2014. Also, sub-Saharan Africa accounts for almost 70% of the global total of new HIV infections. In 2014, 1.2 million people died from HIV-related causes globally compared with an estimated 13,712 people with an AIDS diagnosis in the United States who died in 2012.^54,55

A study of provision of palliative care services in Europe found that Western European countries had coverage for inpatient palliative care service (62%), home care team (52%), and hospital support team (31%) compared with Central and Eastern European levels of 20%, 14%, and 3% respectively. The United Kingdom, Germany, Italy, Poland, and Austria have well-developed networks of hospice services.⁵⁶ Specialized palliative care services improved significantly in about 1 in 4 European countries from 2005 to 2012, but primarily in Western Europe. In Central and Eastern Europe, palliative care home care team coverage is available for only 1 of 10 patients who need it and hospital support teams are reported to be negligible.⁵⁷

According to the Asia-Pacific Hospice Palliative Care Network, Australia and New Zealand have well-developed palliative care services, integrated into mainstream government-funded health care. The more industrialized countries of Japan, Korea, Taiwan, Hong Kong, and Singapore were reported to have moderately-developed programs.^58,59 India reported only six organizations providing hospice and palliative care services for a population of 1,000 million people, however.⁵⁸

In 2017, on the African continent, 21 countries were reported to have no identified palliative care or hospice programs; 11 countries were building capacity for local programs; and 11 countries were providing localized hospice or palliative care services (often supported by external donors). Only Zimbabwe, Uganda, Kenya, and South Africa had integration of palliative care services into wider health care in those countries. NGOs were the major sources of palliative care in many African regions, but they had difficulties with opioid availability, workforce training, and sustainability of services.⁶⁰

In the United States, hospice benefits not covered by private insurance are regulated under the Center for Medicare and Medicaid Services (CMS). Conditions of Participation for hospices are outlined in the Code of Federal Regulations (CFR). The annual edition is the codification of the general and permanent rules published in the Federal Register by the departments and agencies of the federal government. The regulations are revised yearly with publication of the Hospice Wage Index and Payment Rate Update and Hospice Quality Reporting Requirements, which set hospice payment rates by geographic region, as well as aggregate cap payment amounts for each fiscal year.^61–63

For those not eligible for Medicare, Medicaid and Children’s Health Insurance Programs (CHIP) provide hospice coverage for those on a lower income. Federal law requires states to cover certain mandatory populations: children, pregnant women, elderly, and beneficiaries with disabilities who meet income guidelines.⁶⁴ For most others, eligibility is calculated based upon income in relation to a percentage of the federal poverty level; patients may be required to pay a “spend-down,” similar to an insurance deductible payment, before they are eligible for Medicaid coverage.⁶⁵ Patients may also be “dual eligible” in that they qualify for both Medicare and Medicaid programs. The Affordable Care Act (ACA) of 2010 created a national Medicaid minimum eligibility level of 133% of the federal poverty level (US $29,700 for a family of four in 2011) for nearly all Americans under age 65.^66,67 Coverage under private insurance varies, but most insurers follow general Medicare guidelines regarding hospice eligibility. Hospices may also provide care to those otherwise eligible for care who are without insurance under charity care or on a fee schedule.

Patients who are eligible for the Medicare Hospice Benefit (MHB) are those qualified for Medicare Part A. That includes those who:

1. 
   

   Have end-stage renal disease, are in the first month of disability from amyotrophic lateral sclerosis (ALS), have received Social Security Disability Income for 24 months, or are age 65 or older

   
   
2. 
   

   Are US citizens or permanent legal residents for 5 continuous years

   
   
3. 
   

   Have paid Medicare payroll taxes for at least 10 years.⁶¹

In addition, a patient must be certified as being terminally ill by the hospice medical director and by the attending physician, with a life expectancy of 6 months or less if the illness runs its usual course. (A nurse practitioner may serve as attending physician for a hospice patient but may not certify terminal illness; such certification would need to come from the patient’s collaborating physician.) The patient must also receive care from a hospice certified by Medicare.⁶¹

The patient or the patient’s representative must elect to receive the MHB. For the duration of hospice services, the patients waive their rights to other Medicare services, including care from other hospices or home health providers, for any care related to the terminal condition and conditions contributory to the 6-month prognosis. That includes services equivalent to hospice care, including hospital care. Patients may not receive simultaneous disease-modulating care and hospice care with certain exceptions:

• 
  

  Minors less than 21 years old may receive concomitant disease-modulating and hospice care.⁶⁶

  
  
• 
  

  As of 2016, there are also 141 hospices enrolled in a demonstration project under Medicare, piloting hospice care and usual medical care simultaneously. The Medicare Care Choices Model pilot is open to patients otherwise eligible for hospice care who have diagnoses of advanced cancers, chronic obstructive pulmonary disease, congestive heart failure, or HIV/AIDS.⁶⁶

  
  
• 
  

  Veterans receiving care from the Department of Veterans Affairs may also receive concurrent care without having to revoke from hospice care.⁶⁸

All other patients must provide a written revocation from hospice care in order to return to usual medical care. There are no waiting periods for Medicare benefits to become effective in entering or leaving hospice care, and there is no period of time which must elapse before the patient could again either enter or leave hospice care.

Following election of the MHB, a patient may receive up to 90 days of care, known as a benefit period, at the end of which a recertification of terminal illness must be signed by the hospice physician. The patient may then receive a second benefit period of up to 90 days. After day 150 of care, but before day 180 of care, the patient must be seen for a face-to-face recertification visit by a hospice physician or hospice nurse practitioner. The patient may then receive an unlimited number of 60-day benefit periods. In each period from the third on, a face-to-face recertification visit must be made within the month prior to recertification for services. Face-to-face visits are mandatory for participation in Medicare hospice care but they are never billable visits. They may be conducted in conjunction with billable visits, however, if a patient has an evaluation and management visit need. If a hospice does not meet the deadline for the face-to-face visit, the hospice must discharge the patient, perform the necessary visit, and then readmit the patient. The hospice is responsible for caring for the patient at its own expense until the patient is re-enrolled. Patients may be discharged from care if they do not allow the necessary face-to-face visits.⁶⁹

With each benefit period, the hospice physician is responsible for recertifying that the patient has a prognosis anticipated to be 6 months or less if the illness runs its usual course. The hospice physician must provide a narrative describing the advanced nature of the patient’s illness and the progression of disease since the previous benefit period. A patient whose condition stabilizes or does not progress must be decertified from hospice. The patient can then later be readmitted to hospice care when their condition changes. If a patient leaves hospice care for any reason, whether revocation or decertification, all remaining days of the current certification period are voided. Readmission would occur in the next sequential benefit period, no matter how much time has elapsed between periods of hospice care. If the patient is to be re-enrolled in the third hospice benefit period or later, the patient must have a preadmission face-to-face visit prior to being readmitted.⁶⁹

The MHB requires coverage of services related to the terminal condition and conditions that contribute to the 6-month prognosis, regardless of where the care is provided. Table 81–4 lists services covered under the MHB.⁶¹ The interdisciplinary team must be comprised at a minimum of a physician, registered nurse, chaplain, and social worker. Each patient must have an individualized plan of care, detailing frequency of services and what medications and equipment will be provided; each patient’s care is discussed every 2 weeks at an interdisciplinary group meeting with updates as appropriate made to the plan of care. By statute, a minimum of 5% of all patient care services must be provided by volunteers (CFR 418.78: Conditions of Participation–Volunteers).

Psychosocial Considerations

All patients experience their illness in the context of life in general. Financial distress, family conflicts, and mental illnesses add complicating layers to the development of a comprehensive plan of patient care. In worst cases, patients may come from situations of abuse, neglect, or addictions. Patients may be estranged from family or may be reliant upon those with whom they have not had healthy, supportive relationships as they functionally decline, leaving caregiving gaps. Patients may not have the financial ability to hire caregiving help or obtain alternative living arrangements. Elderly caregivers may themselves suffer further tolls upon their health in trying to provide care for declining loved ones. Whereas in the past, nuclear family members may have been more likely to remain living in proximity to one another, the increasing mobility of modern families can further complicate whether caregivers are available for patients.

In the United States, the Family and Medical Leave Act (FMLA) provides job protection for caregivers for up to 12 weeks of unpaid leave per 12-month period for care of a spouse, child, or parent who has a serious health condition.⁷⁰ FMLA does not allow the same job protection, however, to those not legally married or to other family members called upon to be caregivers.

Some vulnerable patient populations may have a deep-seated distrust of the medical community, particularly regarding hospice and palliative medicine care, and thus may not receive as much hospice care for which they qualify. Their fears are often worsened by lack of firsthand experience with hospice care. Such populations include those with disabilities, ethnic minorities (particularly African Americans and Latinos), and those of undocumented immigrant status.

Approximately 56.7 million people (18.7%) of the 303.9 million in the civilian non-institutionalized population had a disability in 2010, making those with disabilities the largest minority population in the United States. About 38.3 million people (12.6%) had a severe disability. People with disabilities receive fewer preventive medicine services than those in the able-bodied population. They are also more likely to experience persistent poverty.⁷¹ Those with disabilities may fear withholding or withdrawing treatments as being a deliberate attempt to shorten their lives, lives that they believe society in general may feel are without quality. Many of those patients have also weathered multiple health crises, during which it was suggested that they would not survive or in which they were previously encouraged to withdraw treatments; therefore, it can be difficult for them to accept a terminal prognosis.⁷²

Members of ethnic minorities may have religious or cultural beliefs that influence their willingness to enroll in hospice care when compared with white patients.⁷³ With historical disparities in health care provision from the relatively-near past, limitation of any medical treatment may be perceived by a person of color as a form of discrimination. Others may believe that medical care is only offered upon their ability to pay.⁷⁴ In one study, African Americans were the racial group most likely to want to be kept on life support, despite their generally agreeing that withholding or withdrawing such technology was an acceptable medical practice.⁷⁴ Elderly African Americans were also found in one study to have a significantly lower rate of completion of advance directives to provide guidance to family about their care preferences and decisions to forgo aggressive interventions at the end of life.⁷⁵

Those without documented resident status may also be fearful of organized medical care. Undocumented immigrants are not eligible for federally funded health care, so they rely upon charitable care from hospices. The patients must typically pay for their own medications, however, which can be challenging due to lack of financial resources, especially if the family wage earner is the patient. Fear of deportation for patient and family members, mistrust of hospice care, and religious and cultural factors can influence willingness to receive hospice care.^76,77

Yet, even in situations with relatively healthy, intact family structures, a limited prognosis puts pressure on patients and families to attend to business affairs. If the sole wage earner for the family becomes the patient, the family may be under severe stress just trying to meet expenses. If the only available caregiver for the patient has to work to provide for the family, there are again major caregiving gaps that can occur. Closing or selling a business, training new employees to take over job positions, and transitioning to unemployed status all add challenges for ailing patients. Completing wills and trusts, estate planning, and advance care planning are all important tasks to be prioritized.

Other practical tasks remain to be addressed. For those who have previously held specific roles in their families, learning to take on new tasks can be challenging. Those who have not been responsible for banking, home and vehicle maintenance, or homemaking must learn new skills while carrying on their own roles and sometimes simultaneously serving as primary caregiver for the patient. A careful interdisciplinary psychosocial assessment of the patient and family unit is critical in helping to develop a comprehensive supportive plan of care.

Spiritual Issues

Spirituality should not be confused with religion: all people are spiritual but not all are religious. There are universal needs for people to find meaning even in the dying process. Patients struggle with loss of control, purpose, and self-worth as their function declines. Finding a new sense of purpose and self-worth can be difficult for patients as it is common to focus on what we can do rather than who we are as a measure of our value. Many previous goals must be abandoned by the terminally ill as they involve long-term ideals that will now not be realized. Patients may be mourning not only those goals but they may also be regretting decisions they made previously that required delayed gratification of those goals.

A common theme among patients is that they do not want to be a “burden” on their loved ones. The hospice team may need to help the patient realize that they could be providing their loved ones with an opportunity to give loving care as a gift to the patient. Often, those who are most likely to provide care are those who have the hardest time accepting it from others; asking the patient to imagine switching places with the caregiver may be helpful.⁷⁸

Developmental tasks of dying include:

• 
  

  Finding new significance in one’s life and redefining self (which may include life review and legacy narratives, and learning to receive love and care from others).

  
  
• 
  

  Closing personal relationships and community roles (which may include expressing of appreciation for relationships and possibly reconciliation for estranged ones).

  
  
• 
  

  Completing business affairs.

  
  
• 
  

  Accepting the end of this life and transcending to what is beyond it. Transcendence requires separation from all our current roles, expectations, and relationships, which can be very difficult for family members who may want to actively interact with the patient as long as possible.⁷⁸

Telling one’s life story, through talks with family, video or audiotape, or written narratives, can help a patient leave a legacy, but such can be difficult for a patient with waning energy.

Some patients want to participate in planning memorial services. This can also provide opportunities for families to discuss what is important to their loved ones. Religious traditions may be very important in a patient’s dying process, but such varies highly. Even for those who have not been actively practicing their religions recently, familiar religious readings, music, or rituals may be important. A careful spiritual history is critical in identifying areas of need and comfort for the patient. In one study, nearly two-thirds of patients felt that their physicians should be aware of their religious or spiritual beliefs. A significant minority of those patients agreed with physician spiritual interaction with patients, increasing from 19% for a routine office visit up to 50% near death.⁷⁹

There are multiple tools to help with spiritual assessment.^80–86 The tools are typically brief screenings to identify the importance of spiritual practices to a patient and family and to help guide the interdisciplinary team in using practices to help the patient and family cope and find comfort in the face of terminal illness. Any member of the team can administer the brief screenings, but more in-depth care will be provided by the hospice chaplain, counselor, or the patient’s personal faith leader.

Formal religious expressions can be very comforting for patients, but they can also add more stress if there is discord or differences of understanding between patient and family or between different family members. The hospice team at times must advocate for the patient’s spiritual expression as guiding how spiritual care is given, particularly if family members have other agendas for the patient’s spiritual experience.

At the most basic, Dr. Ira Byock says that patients need to be able to say four things to loved ones:

• 
  

  “Please forgive me.”

  
  
• 
  

  “I forgive you.”

  
  
• 
  

  “Thank you.”

  
  
• 
  

  “I love you.”⁸⁷

  
  
• 
  

  And some would add a fifth statement: “Goodbye.”

Manifestations

Not all patients will manifest every common sign of end of life; signs can also come and go through the dying process. Patients may also show additional disease-specific symptoms such as jaundice or anasarca that can mask some of the typical signs that death is imminent. Usually, during the early phase of the active dying process, patients become bedbound; lose interest in eating, drinking, or taking medications; and sleep more of the time. That phase can last from hours to weeks. As the dying process progresses, patients become less conscious and reactive and unable to adequately clear secretions. Delirium, either hyperactive or hypoactive, is common. During the late dying process, patients may be in a near-coma or coma state for hours to days. Cardiac output decreases with hypotension and tachycardia. Urine output decreases and the patient has increasing metabolic imbalances. Apnea and changes in breathing pattern are common.⁸⁸ Table 81–5 shows common signs and symptoms of impending death. Families need increased support through the patient’s actively-dying phase, particularly if the patient shows waxing and waning symptoms, which can be very confusing for families.

One study of patients with advanced cancer found eight late-onset signs, occurring in 5% to 78% of patients, which had high specificity and likelihood ratio of death within 72 hours:

• 
  

  Nonreactive pupils

  
  
• 
  

  A decreased response to verbal stimuli

  
  
• 
  

  A decreased response to visual stimuli

  
  
• 
  

  An inability to close eyelids

  
  
• 
  

  Drooping of the nasolabial fold

  
  
• 
  

  Hyperextension of the neck

  
  
• 
  

  Grunting of vocal cords

  
  
• 
  

  Upper gastrointestinal bleeding⁸⁹

Prognostication

Diseases exhibit different trajectories, with decline at variable rates. Patients with cancer and severe acute neurologic events such as cerebrovascular accidents show the fastest rate of decline, followed by the “roller coaster” trajectory of illnesses prone to frequent exacerbations, such as heart failure and chronic obstructive pulmonary disease. Those with diseases such as dementia, chronic multi-system failure, and debility generally show the slowest rate of decline.^90,91

No area in hospice is more fraught by variables that affect accuracy than prognostication, particularly about life expectancy. While most patients progress into states of deeper unresponsiveness, not all patients have that trajectory toward death. One study found several independent risk factors for patients having some significant degree of function on the day of death (defined as some oral intake, variable mental status, limited self-care, and an ability to get out of bed for at least part of the day). Caucasian patients, male patients, patients with a cancer diagnosis, and patients initially admitted to hospice at home were at increased risk of precipitous decline on the day of death.⁹¹ Factors that may or may not prolong the dying process include unresolved emotional or spiritual issues, artificial hydration and nutrition, or supplemental oxygen.^92–94

There are multiple general and disease-specific tools that can be helpful in estimating prognosis, but they need to be used in the context of the individual patient’s status. Table 81–6 gives some of the specific tools available that may assist in determining most likely prognosis and outcomes. One of the most commonly used tools for general status is the Victoria Hospice Palliative Performance Scale (PPS). The PPS is an 11-point scale, scored from 0 to 100 in ten-point increments, that allows clinicians to describe a patient’s functional status in terms of mobility, activities of daily living (ADL) abilities, alertness, and oral intake. It has also been found to have good accuracy in identifying a range of likely prognoses for patients.^91,95–98 Once patients have become bedbound and dependent in ADLs (PPS 30%), median survival in one study was 5 days, but 23% of those patients lived 14 days and 12% of those patients lived 30 days. Diagnosis and level of oral intake may be critical at that level in narrowing prognosis. When oral intake is then reduced to sips and bites (PPS 20%), median survival dropped to 1 day, but again a minority of patients survived as long as weeks. When oral intake ceases and patients are receiving only oral care (PPS 10%), prognosis is typically in a range of hours to days.^99,100

Studies have shown that, unfortunately, clinicians are not very good at accurate prognosis.¹⁰¹ The majority of clinicians overestimate prognosis significantly, up to five times greater than actual in one study,¹⁰¹ which may keep patients and families from prioritizing and completing the tasks necessary, as they feel that there is “still time.” Overestimation of prognosis may also expose patients to unnecessary treatments or to treatments that actually worsen their conditions rather than help it.¹⁰² Patients and families can be quite distressed by either overly optimistic or pessimistic estimates of life expectancy. In general, it is best to give ranges of prognosis, such as hours to days, days to weeks, or weeks to months, or to give prognosis as minimum, average, and maximum expectations. The clinician should acknowledge to the patient and family that such estimates are typically based upon what the average expectation is for a particular disease, but that multiple factors affect individual prognosis. Ongoing discussions of prognosis are important over the course of care for a patient and family, particularly when there are significant changes in the patient’s condition.

Management

Important tenets for management of impending death are excellent symptom control, honest communication with patient and family, education for family members about what to expect as death nears (foretelling), and interdisciplinary team support for the patient and family.¹⁰³

Fatigue

Fatigue is often one of the most bothersome symptoms for patients, particularly earlier in their disease progression while they are trying to actively attend to tasks that are important to them. It is even more prevalent than pain, with 75% to 90% of patients reporting it.^104–107 Encourage regular and adequate nighttime sleep, pacing of activities, and energy conservation techniques, recommending adequate rest breaks between large energy expenditures. Patients frequently make the mistake of trying to do everything they can on a “good day,” only to find that they then have an energy debt to pay for days to follow. For special events that will likely exhaust the patient’s endurance, recommend a relative rest day before and after the activity. Psychostimulant medications can be tried to help with alertness, but should be given early in the day, no later than midday, to prevent insomnia. The medications should be used with caution in those with anxiety, sleep disturbances, or cardiac arrhythmias (Fig. 81–3).

Oral steroids, such as dexamethasone (which has less mineralocorticoid activity than other oral steroids), may help with mood, energy, appetite, and weight loss. The effects of the medication are typically temporary, up to a few months, and the weight gain with the medication is from increased body fat and water retention, not from increase in lean muscle mass. Edema, Cushingoid features, and elevation of blood sugar are common side effects.

Despite all measures to help with alertness, as patients near death, they usually go through a phase of hours to days of being unresponsive. This period can be difficult for families who are trying to maintain any interaction with the patient; many families will mistakenly believe that medications are being used to sedate the patient into unresponsiveness. It is important to discuss with families that increased sleeping is the natural course of progression of disease. A trial of decreasing doses of any medications with sedating side effects can be done, after discussing with the family about the need to maintain good symptom control so as not to have the patient in a situation of pain crisis or uncontrolled dyspnea.

Pain

Pain is also prevalent at the end of life. Patients may have multifactorial pain: pain from chronic conditions and injuries unrelated to the terminal diagnosis, pain from the disease itself, and pain from treatments given for the terminal condition. Pain may be nociceptive, neuropathic, visceral, existential, or a combination of those factors. For mild symptoms, acetaminophen/paracetamol, non-steroidal anti-inflammatory medications, and oral or injectable steroids may be helpful. Use of tricyclic antidepressants, anti-epileptic medications, or supplements such as alpha-lipoic acid may be helpful for particular neuropathic pain. Nonpharmacologic therapies such as massage, distraction, guided imagery, relaxation techniques, meditation, and expressive therapies are also useful adjuncts for pain control. For cancer-related pain, the World Health Organization has developed a step ladder approach for management (Fig. 81–4).

Physiatric techniques such as therapeutic modalities, trigger point or joint injections, and nerve blocks may provide significant relief of focal pain. Intrathecal pumps may also be used in certain conditions; in the United States, Medicare and commercial insurance will typically cover such devices for patients with life expectancy of 3 months.¹⁰⁸ Such devices are typically only available in higher-income countries, though, and eligibility criteria may vary by country. More technological or invasive physiatric modalities become less practical later in the disease process as patients are often unable to go to a clinic for treatments.

Opioids remain the mainstay for treatment of moderate to severe pain and may be very helpful for treatment of dyspnea, cough, and uncontrolled diarrhea as well. Methadone, with its enhanced antagonist activity at NMDA receptors, may be more helpful for neuropathic pain than other opioids. It must be used with caution, particularly with other medications that prolong the Q-T interval, as it can precipitate fatal Torsades de pointes.^109–111

For patients with continuous or frequent pain, long-acting formulations of opioids are favorable, whether long-acting oral formulations, transdermal patches, or continuous infusions such as with patient-controlled analgesia. The availability of opioids varies significantly worldwide, and may vary even within a particular country, however. As all opioids medications are anticholinergic, side effects can include constipation and urinary retention, sedation or altered thinking, and dry mouth. A bowel management program is mandatory with use of opioids and is a quality measure for hospice care in the United States.¹¹² Most oral bowel medications require that patients be able to take in a sufficient amount of water for efficacy. As oral intake decreases near death, bowel regimens may need to be changed to manual disimpaction, suppository, or enemas if the patient is unable to maintain sufficient liquid intake.^113–120

Much is currently being made about opioids and public safety in the United States. In 2014, 28,000 people died from overdose of opioid medications and heroin, the largest number in history.¹²¹ At least half of those deaths were related to prescription opioids. A comprehensive pain evaluation and psychosocial screening is mandatory before prescribing opioids for pain. Risk Evaluation and Mitigation Strategy (REMS) training is available to physicians to improve safety in opioid prescribing. Screenings such as the Opioid Risk Tool are also available to assess those patients who may be at higher risk for drug abuse or diversion.¹²² Limiting numbers of opioids prescribed at one time, having families keep logs of medication administration, staff monitoring of pill counts, and ongoing careful psychosocial assessment of the patient and family are strategies to mitigate opioid misuse. A past history of addiction to such medications should not disqualify a patient from receiving adequate symptom control; in fact, tolerance may require an even higher dose of the medications to be effective. Patients with a known history of drug addiction or diversion may need a formal pain contract, lock boxes for all controlled substances, family control of the administration of medications, and staff pill counts to maximize safety in opioid use. Urine drug testing can be done but as a practical matter adds expense to the hospice’s care. Also, the drug test must be done in the correct fashion to avoid mistakenly accusing a patient of misusing meds. Formal laboratory chromatography-mass-spectrometry to break down and identify individual molecules is far more accurate than an immunoassay point-of-care testing often done, but it is significantly more expensive.¹²³

Gastrointestinal Symptoms

As mentioned above, constipation is common at end of life, often related to medications with anticholinergic effects that are needed for symptom control. Diarrhea can be seen however, particularly in cases of short gut syndrome, malabsorption, or dumping syndrome.^124,125

Nausea and vomiting, early satiety, and anorexia/cachexia are often bothersome symptoms for patients, particularly those who have intra-abdominal pathology. Families are often invested in trying to get patients to eat certain quantities or types of food. It is important to take the lead from the patient in pleasure intake; teams may need to teach families alternate ways to provide loving care than trying to feed the patient. Diets may be liberalized from previous restrictions such as cardiac or diabetic diets. Patients and families may also choose not to follow consistency guidelines for dysphagia. Soft, calorie dense foods may help facilitate intake. Nutritional liquid supplements, many of which are commercially available, may be easier for the patient to consume when compared with solid foods (Fig. 81–5).

Delirium

Delirium is very common at end of life. One study reported an incidence as high as 88%; however, 50% of the delirium was reversible with treatment.¹²⁶ Hypoxia, dehydration, and infections are common causes and may benefit from treatment for those patients with longer life expectancies. Sensory deprivation of not having eyeglasses or hearing aids may exacerbate delirium. It is important to try to maintain day–night distinctions especially for hospitalized patients. Underlying dementia is another risk factor for the development of delirium.^126,127

For patients who are very near death, trying to reverse factors leading to delirium may be less practical. In such cases, treatment consists of antipsychotic medication, analgesics, and often supplemental oxygen.¹²⁸ As urinary retention and constipation may worsen delirium, use of indwelling urinary catheters and bowel program may be helpful. Benzodiazepines are not recommended for the very elderly or for those with post-traumatic stress disorder such as combat veterans, due to a high incidence of paradoxical reaction. Promoting a calm environment by turning down lights, maintaining a comfortable room temperature, turning off the television, and playing soft music are nonpharmacologic ways of addressing delirium. Patients may also benefit from discontinuing or decreasing doses and frequencies of medications that can worsen delirium (Fig. 81–6).

Dyspnea

Dyspnea has been described in up to 70% of patients with cancer diagnoses. It can be present even without significant demonstrable pulmonary involvement.¹²⁹ Nonpharmacologic treatments of dyspnea include those mentioned above for treating pain. In addition, supplemental oxygen, cooling the patient’s room, providing circulating air with a fan blowing by (but typically not on) the patient, elevating the patient’s head, and avoiding crowded rooms (too many visitors at once) are nonpharmacologic strategies for management. Benzodiazepine medications may be helpful in managing air hunger and anxiety associated with dyspnea, but they also have significant anticholinergic side effects. Opioids, when used properly, can be very helpful for treating dyspnea, particularly for premedicating the patient prior to activities that tend to exacerbate the dyspnea, such as ADL activities. Encouraging small light meals or snacks rather than three larger meals a day may help decrease bloated feelings that worsens dyspnea as well as helping to decrease fatigue from eating.^130–134 Patients may experience significant dyspnea even with normal oxygen saturations. Supplemental oxygen or medical air may still be helpful.¹³⁵ Use of adaptive equipment and energy conservation techniques are also important.

Secretions

Difficulty with managing secretions is often a significant problem for patients with Parkinson’s disease, degenerative neurologic conditions such as amyotrophic lateral sclerosis or dementia, and for those in the final hours to days of life who have lost the ability to swallow effectively. Anticholinergic medications such as scopolamine patches or gels to the skin, sublingual hyoscyamine, glycopyrrolate, or atropine ophthalmic drops administered orally may be helpful in preventing further secretion accumulation.^136,137 The anticholinergic medications can worsen confusion as all but glycopyrrolate cross the blood-brain barrier. Worsening of tachycardia is also a common occurrence near death. Positioning the patient in side-lying to near prone and often with the head somewhat lower than the body can help in draining secretions from the mouth or pooling the secretions out of the main airways to decrease noise of respirations. Family members may be very disturbed by a patient’s noisy breathing, wondering if the patient’s lungs are filling with fluid. Attention to this symptom is vital in helping the family members perceive that the patient’s death is peaceful rather than their perceiving the patient as having struggled in the dying process.

Depression

Depression is also often seen in terminal illness (estimates vary from 25% to 77%).¹²⁸ Certainly typical antidepressant medications may be helpful, but not all existential sadness a patient or family member feels will be amenable to pharmacologic treatment. Certainly, efforts to address depression from a pharmacologic standpoint are reasonable and may be quite beneficial to the patient. For patients with a very limited life expectancy, selective serotonin reuptake and serotonin-norepinephrine reuptake inhibiting medications may, however, take too long to have an effect. Psychostimulant medications and oral steroids may be more effective for improving mood if prognosis is anticipated to be less than several weeks. Expressive therapies such as journaling, art therapy, and music therapy may be useful. Patients who have limited anticipated life expectancy may not have the energy for extensive cognitive-behavioral therapy techniques, but supportive counseling from social workers, chaplains, and religious leaders can also help. Support from family, friends, and the community cannot be underestimated in helping a patient cope with sadness that often accompanies a terminal illness. Sometimes patients just want to forget that they are dying for a while; friends and family should be encouraged to relate to the patient in as normal a way as possible, without feeling that every interaction needs to be focused on the patient’s impending death.

A source of distress for patients and families can unwittingly be caused by inquiries of those who want to stay apprised of the patient’s status. Friends and acquaintances, from sincere concern, may burden the family unit with constant questions about the patient’s treatment or condition. There are now multiple websites that allow patients to control information about them; Care Pages (https://www.carepages.com) and Caring Bridge (https://www.caringbridge.org) are two examples. Patients and families can post updates that are available to anyone given access to the site, so that numerous friends can receive updates without the family having to field individual phone calls. Friends can also leave comments for the patient and family, who can read them on their own schedule. Cards and letters from friends are also nice, as they are available to the patient whenever the patient has the energy to look at them and can be read many times over if the patient desires.

Patients and families may also not be prepared for the burden that offers of help place upon them at an already trying time. Finding a close friend to serve as gatekeeper of offers of help can be a useful strategy. The family can have the gatekeeper control the flow of meals and help with home care, housekeeping, and other practical tasks. Families may need to be given permission to turn off the telephone, to not respond to every email, and to place a sign on the door requesting no visitors. The patient is at the center of the need for care, followed by family members. True friends, colleagues, and acquaintances may all have grief over a patient’s situation and feel a need to do something to help, but their needs should not overshadow the needs of the patient and immediate family.¹³⁸

As important as attentive symptom assessment and management is from the clinician standpoint, management of family expectations may be as important in the family’s ultimate assessment of whether the patient had a peaceful and comfortable death. Physical signs such as cyanosis, mottling, cold limbs, changes in breathing pattern, and decrease in urine output may be quite distressing to families. Normalizing such signs by explaining what is happening in the body may help family members not to be so frightened. Foretelling earlier in the course of care may let families identify the signs when they arise; they may be less apprehensive if told in advance of things they might encounter in their loved one’s dying process. Ongoing education for the family by the entire hospice team can help families feel less afraid and better prepared for the changes to come.

Grief does not begin at the time of a death, but rather far before it, sometimes even before an official diagnosis. Patients may worry about the import of a mass or about a change in weight or function even prior to finding out that they indeed have a serious medical condition. The reactions to a serious diagnosis are varied. Grief need not be limited to a death, as rehabilitation medicine providers know very well; the grieving process can also be seen in those who acquire a significant disability. Patients may be grieving loss of body image, loss of physical or mental function, loss of sexual function, loss of independence, and loss of plans, hopes, and dreams for the future. Patients with a serious medical condition may go through multiple small grief processes as they experience increasing disability with declining function.

Dr. Elisabeth Kübler Ross identified five stages of grief in her 1969 book On Death and Dying¹³⁹: denial, anger, bargaining, depression, and acceptance. The stages are universally common in anticipatory grief as well as in bereavement, but they are not a linear progression. Indeed, patients and families may experience multiple of the stages in a single day, and family members may be in very different stages of grief from one another on any given day.

Some patients want to talk about their disease, their fears, and their hopes for their families following their deaths. Others may now want to dwell on those thoughts. Listening is therapeutic. Assure the patient that they will have care and will not be abandoned as death nears. Some simple techniques to open difficult conversations include asking the patient if they have any fears or anything to talk about. Ask about how to help the patient. Avoid brushing off the patient’s fears with dismissive statements such as, “There will be time to talk about that later,” or, “Of course, your care will not be a burden to your family.”¹⁴⁰

A sense of being abandoned by the medical community is a subtle and under-recognized source of grief for some patients. When patients have been under oncology or other specialty medicine care or have had a prolonged, intensive relationship with rehabilitation providers, patients sometimes miss going to appointments and the ongoing care that the medical providers gave, particularly when care is transitioned solely to a hospice team. Although the hospice team will provide the patient with a new support system, they may not replace the role that previous providers played in the patient’s care.¹⁴¹ Clinicians can request regular patient updates from hospice providers and use those updates as opportunities to reach out to the patient and family to let them know that they are still concerned about the patient even if they are not involved in daily care any longer. Patients can still see their usual physicians while under hospice care, although decreasing mobility often prevents their attending office visits. If a patient does go to an office visit, the visit needs to be coordinated with the hospice regarding avoiding testing and imaging, which typically will not be covered by the hospice as necessary for a palliative plan of care. Some physicians will make home visits to patients unable to come to the office. A phone call or card from the office or team may also be very comforting to the patient and family.

Grief is as individual as the mourner, but there are typical patterns and time frames in the grieving process. The Yale Bereavement Study was a longitudinal cohort study that looked at the experience of 233 bereaved individuals over a 3-year period. The study assessed the pattern of change of disbelief, yearning, anger, depression, and acceptance among the survivors in 1 to 24 months after loss. The study found peaks in the indicators of grief that occurred in a consistent pattern:

• 
  

  Disbelief (1 month)

  
  
• 
  

  Yearning (4 months)

  
  
• 
  

  Anger (5 months)

  
  
• 
  

  Depression (6 months)

Acceptance increased over the course of that time. Acceptance was the most endorsed indicator, even in the first month after the death. Yearning was the most frequent negative indicator reported through all periods of the study. Given that the above negative indicators peak within 6 months after bereavement, those who still exhibit high levels beyond that period may need further evaluation for prolonged grief disorder.¹⁴²

While the time frames above hold true, it is common that family members and friends anticipate that the primary bereaved will be most sad, angry, or depressed immediately following the death. Certainly, the bereaved may have significant periods of demonstrable grief immediately following the death, but that period of time is also one of ongoing demands and significant activity for the bereaved. Arranging for funeral or memorial services, paying medical bills, completing business affairs, and executing wills are all distracting activities that may temporarily ameliorate the grief response. The immediate period following a death is also the time when the primary bereaved is surrounded by the most support, and may feel required to serve as host to those attending memorial events. Grief responses may be more common when the bereaved is alone, particularly at night, rather than when involved in distracting tasks during the day. Friends and relatives may become concerned when the bereaved does not seem to “get over” the grief within a few months, when, in fact, it takes some time for the bereaved to have the time and energy to devote to the grieving process. The age, gender, culture, and nature of relationship between the deceased and the bereaved may all influence the degree of the grief response displayed.

It is common for the bereaved to continue to talk to the deceased, to find themselves waiting for the deceased to come home, and to consider the deceased’s preferences in making decisions for some time. Those actions tend to decrease over time as acceptance of the death increases. The first of birthdays, anniversaries, and holidays following the death may be times of exacerbation of grief responses. Some families choose to retain special rituals for those occasions; other families cannot imagine the rituals without the deceased and must establish new practices. Anticipatory counseling for those potential increases in grief responses may help families prepare in advance.

An uncommon, but important, early physical manifestation in acute grief can be Takotsubo cardiomyopathy, stress-induced or “broken heart” cardiomyopathy. This condition represents only 1% to 2% of those presenting with symptoms of acute coronary syndrome from all causes, but it may represent up to 5% of women evaluated for a heart attack. It is caused by extreme stresses, such as the death of a loved one. Chest pain is the predominant symptom. Classically, the mid-ventricular segment of the left ventricle becomes akinetic, with ballooning of the left ventricular apex. When the heart contracts, the heart silhouette therefore looks like an earthen octopus trap, from which the syndrome gets its name. It affects older, postmenopausal women more frequently (less than 10% of patients are male). Hypotension is frequent and may require intensive care management. Treatment is generally the same as that for acute coronary syndrome. Unless the patient has severe or multiple underlying medical conditions, recovery is usually spontaneous within 1 to 2 months, although about 20% of patients may develop congestive heart failure.^143,144

When intense grief responses persist long after a death, the bereaved should be evaluated for complicated grief. There are some differences in the diagnostic signs and time frames established for diagnosing Prolonged Grief Disorder in the International Classification of Disease (ICD), which can be diagnosed 6 months following a death, and Persistent Complex Bereavement-Related Disorder in the Diagnostic and Statistic Manual of Mental Disorders (DSM) by the American Psychiatric Association, which has a 12-month time frame for diagnosis. Both disorders are characterized by the following characteristics:

• 
  

  The death was a close relationship

  
  
• 
  

  Persistent yearning for the deceased, often to a disabling degree

  
  
• 
  

  Confusion about one’s new role in life

  
  
• 
  

  Distrust of others or difficulty in relationships

  
  
• 
  

  Anhedonia and difficulty in making plans for the future

  
  
• 
  

  Bitterness and anger regarding the loss

  
  
• 
  

  Adverse effects on social, occupational, and other important functional activities

The DSM diagnosis of Persistent Complex Bereavement-Related Disorder also requires that the reaction be out of proportion or inconsistent with the cultural or religious tradition of the bereaved.¹⁴⁵

A meta-analysis from grief treatment trials found that the incidence of complex grief reactions varies from fewer than 10% to as many as 20% of bereaved individuals for developing complicated grief.¹⁴⁵ Risk factors include the following:

• 
  

  History of prior loss, particularly if recent

  
  
• 
  

  History of mood or anxiety disorder in the bereaved

  
  
• 
  

  Death of a close relation, particularly if the bereaved was primary caregiver for the deceased

  
  
• 
  

  Violent or unexpected cause of death, particularly if the bereaved saw the death or identified the deceased’s body

  
  
• 
  

  Lack of social support

  
  
• 
  

  Traumatic childhood experiences, such as abuse or neglect of the bereaved

  
  
• 
  

  Other concurrent life stressors¹⁴⁶

The syndrome may have associated anxiety, depression, and suicidal thoughts. Increased physical ailments, such as hypertension and exacerbation of heart disease may occur. The bereaved may display nicotine, alcohol, or substance abuse. The bereaved may have difficulty with performing ADLs. Their social and occupational activities also suffer.¹⁴⁶ Treatment for complicated grief involves specialized therapies (see Interventions in this chapter).

Often the bereaved experience sequential losses of varying degrees. Death of a spouse has been rated as the most stressful life change event, but multiple life events (and even events that are supposed to be pleasant, such as vacations and holidays) can add stress to one already in a grieving process. For the very elderly. in particular, multiple losses of friends can become a common occurrence. The closer the losses are chronologically, the more additive the impact of the losses can become.

To take a history of loss, ask about the following:

• 
  

  Other deaths in the family

  
  
• 
  

  Changes in health of the bereaved

  
  
• 
  

  Changes in work

  
  
• 
  

  Changes in finances or living arrangements

  
  
• 
  

  Changes in routine, including social, recreational, and church activities

  
  
• 
  

  Legal troubles within the family

  
  
• 
  

  Impending big events for the family^147,148

As death approaches, the treating team has an important role in preparing the family for the grief process. Families may have questions about physical signs and symptoms, medication administration, what to expect as the disease progresses, and updates on prognosis. Families often need permission from the team to express complex emotions: sadness, anger, moments of joy or mirth, and even relief from often difficult caregiving tasks. Family members often wish that the patient will decline quickly so as not to linger at an unacceptable level of disability, but then they are ashamed for having such thoughts. The team normalizing those emotions can bring much relief to loved ones. It is important for the team to continue to inform and educate the family about any topics they want to know related to the impending death, to provide emotional support, and to recognize potential abnormal grief reactions that might require referral to specialty mental health services.¹⁴⁹

It is important for family members to be given every opportunity to be present at the time of the patient’s death. In situations of ongoing family conflict, the team may need to intervene to allow all members of the family to have the time they need with the patient. Not all family members will choose to try to be present for the death. Likewise, even if a family member intends to be present for the death, the patient may die when the family member has stepped out of the room. Family members who find that their loved one has passed sometime in the night may feel guilty for having been asleep rather than being at the patient’s side. Preparing family members for those possibilities can help lessen the guilt of the family member for having missed the death.

If the patient’s death does not occur at home and family members are not present (such as in a hospital, long-term care facility, or inpatient hospice), the family should be notified of the death as soon as possible, ideally by someone who knows the family. The body should not be moved to the morgue or mortuary until the family has had the opportunity to see the deceased if they desire. Family members may be in too much shock to formulate all the questions they might have at the time of the death; the team should let the family members know that they can call in the future if questions arise. Antidepressants and anxiolytics should not routinely be given to the newly bereaved; while they may blunt some of the negative feelings associated with the death, they merely delay the bereaved dealing with those feelings and prolong the grieving process.¹⁵⁰ For insomnia not resolved by sleep hygiene for the bereaved, sedating antihistamines at bedtime may be helpful. A sedating anxiolytic hypnotic may be used in severe cases, but it is recommended that such use be for no more than 2 weeks.¹⁵⁰

The Medicare Hospice Benefit requires bereavement support be provided to families for 13 months following patient death. Individual therapies are provided by a counselor or certified grief support specialist. Following a period of individualized grief therapy, family members may benefit from support groups, sponsored by the hospice, community, or faith groups.

In situations of complicated grief, specialized therapies are required. Similar to treatment for post-traumatic stress disorder, therapies for complicated grief usually include cognitive behavioral therapies. Such therapies may involve exposure to reminders of the loss along with restructuring activities, with emphasis on goal-setting and developing relationships.^151–154 If family estrangements were not resolved prior to the death, the bereaved may be encouraged to journal, write a letter to the deceased, or participate in role-playing exercises to communicate what they would have said to the deceased. Other expressive therapies such as art therapy may also provide emotional outlets for the bereaved. One meta-analysis showed nearly twice as many patients with complicated grief responded to cognitive behavioral techniques when compared to interpersonal therapy.^153,155

There is little role for medications specifically for complicated grief, but in situations in which the bereaved has significant major depression or a pre-existing mental health disorder, medications may be given in conjunction with grief therapies.

The Child as Bereaved

A child’s understanding of death varies with age as well as with the intellectual and emotional maturity of the child. Table 81–7 shows the typical understanding level of children regarding death and their needs based upon age. In general, children need to maintain connection to the patient and the rest of the family, need to be kept informed about changes in the patient’s condition and what to expect, need to keep a consistent schedule, need to play or engage in age-appropriate activities, and need to have closure following the death by seeing the deceased.¹⁵⁶

Speak with children in simple, age-appropriate terms. Avoid euphemisms and answer questions honestly. It is a bad idea to speak of death as the person being asleep, as that might cause the child to fear falling asleep, or of the person having been taken away, as that can create fears in young children that they might be taken as well. Explain to the child that death means that the person will not physically be with them any longer. It is important to reassure the child that none of their actions resulted in their loved one dying.

Especially if the patient is a parent, another caring adult, well-known to the child, may need to concentrate specifically upon the child’s needs, including planning regular activities involving the parents. Such may allow the other parent to provide primary care to the patient while ensuring the child’s needs are also met. A question that always arises is whether the child should be present at the bedside at the time of the patient’s death. The answer depends upon the child: age, temperament, and maturity. If the child is to try to be present, the child should be prepared in advance for what they will see or experience. The child should have a quiet activity to do; children cannot be expected to quietly sit a vigil at the loved one’s side. A well-known adult should monitor the child for signs of excessive stress and be prepared to take the child from the room if they are not coping well with the experience. It is recommended that the child see the body before it is taken away, to help them grasp the reality of the death.¹⁵⁷

The Child as Patient

Symptom management principles are the same for a child as for an adult. Assessments may be somewhat more challenging with young children, however, as they lack a vocabulary to explain their symptoms. Therefore, many assessments of pediatric symptoms are done by observational scales. Medications used for symptom management are also generally the same as for the adult population; however, dosing in the pediatric population is typically done by weight. It is, therefore, important to frequently assess the patient’s weight to avoid over- or under-dosing medications.

For hospitalized patients, clinical recommendations are that procedures should be done in a treatment room rather than the patient’s hospital room, making the hospital room a “safe place.” One study has suggested, though, that patients and parents may prefer that minor procedures such as dressing changes, lab draws, or starting an IV line be done in the patient’s room for the patient’s comfort and to avoid the inconvenience of moving patients with significant mobility deficits from complex medical issues.¹⁵⁸

Dying children in general have several psychosocial needs:

• 
  

  To be able to participate in activities that are age–appropriate. As disease progresses, modification of participation or use of adaptive equipment and energy conservation techniques may become more necessary.

  
  
• 
  

  To have someone who will listen, whether about their fears and concerns or about everyday things. Not every conversation needs to be about weighty topics. Children may not want to talk about dying. Parents, however, may have a greater need to do so and should seek out someone with whom they can discuss their own fears and emotions.

  
  
• 
  

  To be allowed to withdraw at times and not be forced to talk.

  
  
• 
  

  To participate in spiritual or cultural rituals that help them express gratitude and prepared to say goodbye.

  
  
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  To participate in wish fulfillment programs if available. A special family trip or event can create lasting memories for the entire family.

  
  
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  To have assurance that family members, although they will be sad, will be okay.

  
  
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  To be reassured that they will not be alone in the dying process.

  
  
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  To have appropriate boundaries set. A lack of boundaries can leave the child feeling or acting out of control.¹⁵⁹

It is important that the patient be given age-appropriate information about the medical condition, and that the patient be allowed to participate in decision-making to the extent of their capacity. While a very young child may have limited ability to discuss preferences, teenagers certainly often have very strong opinions about what should happen in their care. They may be very concerned about the physical changes the treatments would cause: amputations, hair loss, weight changes, or other things that affect physical appearance may be very sensitive issues in particular. Teens may want to appear as normal as possible to their friends, and thus may resist treatments such as adaptive mobility equipment that would make them appear different. Some patients are so sensitive regarding appearance that they may not want to attend school or may be isolated from friends, who often themselves do not know how to react to changes in the patient.¹⁶⁰ Others may fight to maintain as ordinary activities as possible, whether playing sports, visiting potential colleges, or attending school functions. The patient’s ability to participate usually declines over time as the disease progresses, and participation in the activities may precipitate a significant energy debt for the patient.