But the dying process is often protracted, filled with repetitive losses and rebounds as the progressive decline and downward spiral transpire, so rehabilitation shifts to palliative care to meet the changing needs of increasingly frail and debilitated patients (Rome et al., 2011). In these commonly occurring cases, the purposes of care are to assist the patient and other caregivers with quality of life issues such as pain control (Dalacorte et al., 2011), positioning, mobility, handling and toileting, and to provide dignity to a human being and his or her family.

When a patient has little or no potential or refuses rehabilitative care, then respect, dignity and physical as well as emotional comfort must be given freely by all ethical people who come into contact with this human being. At such a time, rehabilitation for the purpose of restoring or recovering function is obviously not appropriate; however, palliative care is. ‘Palliative care is to relieve the suffering of patients and their families’ at the time when life is ending (Rome et al., 2011). Often, care is directed toward the dying patient’s family as much as it is given to the patient. For example, the family might need help in accepting the harsh and sad reality of the impending expiration.

In palliative care, an interdisciplinary team including nurses, social workers, physical therapists, pastoral counselors, family therapists and physicians usually provides the better services. Family members are crucial members of this team. The desired outcome is a ‘good death’, which is defined as ‘one that is free from avoidable distress and suffering for the patients, families and caregivers: in general accord with the patients’ and families’ wishes; and reasonably consistent with clinical, cultural and ethical standards’ (Field & Cassel, 1997).

Scarre (2012) suggests that there is no such thing as a ‘good death’. This has led to an increased interest in wishing to hasten death (Monforte-Royo et al., 2012).

Emanuel and associates (2001) developed the ‘needs at the end-of-life screening tool’ (NEST), which is concerned with four areas: (i) needs that are social, financial, caregiving and access to care; (ii) existential needs that are spiritual, purpose, distress and settledness; (iii) symptoms that are physical and mental; and (iv) therapeutic needs that are relationship, information and goals of care (Emanuel et al., 2001). These categories of care may be helpful for all members of the team and may enable a ‘good death’ (Della-Santina & Bernstein, 2004).

Emanuel et al. (2004) reported that talking in a structured interview with terminally ill patients and their caregivers caused little or no stress in nearly 90% of their subjects and that nearly 50% found it to be helpful. These researchers found the interview to be helpful, especially for ethnic minorities and persons who were anxious. Over 50% of dying patients who were having difficulty in coming to closure with family and friends reported that the discussion was helpful.

Appropriate services from a physical or occupational therapist may help with proper positioning or mobility in bed, with sitting and with assisting to toilet. Speech therapy may be helpful for teaching swallowing, mouth care and communication modifications. Perhaps at this stage of life, the end, the ability to communicate at any level is a most crucial need, especially for the sake of family and intimate friends.

Palliative care is not something that is done only at the end of life. Efforts to moderate the intensity of pain and minimize functional limitations and impairment should have been made prior to clinical recognition that the patient has poor rehabilitative potential and is approaching the end of life. So rehabilitative and palliative care are not mutually exclusive but are on a continuum, with the emphasis on curative recovery of function lost lying at one end of the spectrum and on comfort and moderating the intensity of pain lying at the other, when restoration is unlikely or impossible.

This concept of the continuum of rehabilitation/palliation fits well within the parameters of the Guide to Physical Therapist Practice (1997), especially with the roles of the physical therapist in consultation and communication. The interventions of coordination and communication are particularly pertinent, as they can be used to coordinate care of the patient with family, significant others, caregivers and other professionals. This involves instruction in proper procedures and techniques but holds quality of life issues and palliation as the focus. In 205 the American Physical Therapy Association (APTA) validated the purpose of physical therapy care at the end of life in the hospice setting (Emerging PT Practice: No. 13).

Pain management for the terminally ill patient usually involves medication, especially narcotics. Some patients and their families choose not to use these types of medications because of their beliefs or because of the lightheadedness or drowsiness that results. The physical modalities of the various heat or cold applications and electrical stimulation are beneficial, although realistic expectations are requisite. The effects of the portable and easily used transcutaneous electrical nerve stimulator (TENS) are less potent and not identical to the effects of a dose of morphine, but they are of value. The physical modalities are described in more detail in Chapter 67, ‘Conservative interventions for pain control’.

Range of motion exercises help to control pain and to prevent contractures, stiffness and tissue breakdown. These can often be taught to family members; that way, they have an opportunity to participate in the care of their loved one rather than being just bystanders. Further, these exercises require physical contact, which is an important human need that may be lost to the dying patient because of medical interventions or simply because family members do not know whether or not handling will cause harm. Gentle massage is therapeutic too, both physically and emotionally.

Complementary and alternative therapies such as acupuncture, music therapy, homeopathy, healing touch, imagery and relaxation techniques may be helpful. Dying persons who inquire about these interventions should not be left with a sense of hopelessness even if efficacy has not been firmly established (Dalacorte et al., 2011).

When providing healthcare, be it curative or palliative, it is vital to remember that patients and their families have real emotions that must be considered. Bereavement is a process that starts before death and continues after it. The family and intimate friends are facing a loss, sometimes one that they are not ready to accept, and denial is a common coping mechanism. Denial may be used by the patient, too, and that can impede the more important acts of completing one’s life work, settling one’s affairs and saying goodbyes. When working with a patient and family members at a time when all of them may be in various stages of denial, it is necessary to be honest, but not brutally so. Empathy and honesty help, especially when they come from all members of the healthcare team and from clergy (Rome et al., 2011).

Anger and frustration are also commonly encountered in a dying patient and may be directed at family members, at God, or at some or all of the medical care providers. Fear and guilt may also be present, for death is an unknown. Several of the world’s major religions have taught the concept of sin, and the dying person may have a sense of guilt about the commissions or omissions of life, and may regret the inability to do something about them in the last remaining days.

Again, empathy, honesty and dignity are important. At the end of life, a person should feel that he or she is okay and is valued by the medical providers as a human being until death and then as a memory.

Many patients and families are most appreciative of anything that can be done to provide additional comfort, dignity and worth. Therein lies the inner strength to continue to work with patients and their families as life completes its journey.

The hospice concept developed in the 1960s in the UK; in the US, it is now a Medicare Part A program, which usually starts when a patient is determined by a physician to have less than 6 months left to live. A wide variety of physical capabilities and needs are found among hospice patients. In the early stages of hospice care, rehabilitation services may indeed be curative and, in the end, only palliative. The blending of one phase into the other is usually gradual, but the consultation and care provided by rehabilitation specialists as members of the hospice team will maintain the quality of life at its optimal level (Della-Santina & Bernstein, 2004; APTA, 2005).

Certain signs indicate that death will occur soon. In the final days the patient may become increasingly somnolent and diaphoretic, and intake of fluids and food may nearly cease. Parenteral nutrition is not advocated at this time; however, oral care and the use of lip salve and ice chips is palliative (The Merck Manual of Geriatrics, 2011). The toes and fingers as well as the nose and ears may become cyanotic as the circulation and oxygen perfusion decline. The death rattle, a frequent cause of distress for family members, results from bronchial congestion or palatal relaxation. If desired, clergy should be consulted, and the family can be present and hold hands or touch or rub the loved one to say final goodbyes. Peace, dignity and respect must prevail.