Topic	Introduced in chapter
Ethics committees	1
Ethics consultation	1
Care and a caring response	2
Patient-centered care	2
Quality of life	2
Ethics of care approach	4
Virtue	4
Benevolence	4
Fidelity	4
Nonmaleficence	4
Autonomy or self-determination	4
Six-step process of ethical decision making	5
Health care teams	9
Hope	11
Do not resuscitate (DNR)	11
Shared decision making	11
Informed consent	12
Surrogate decision maker	12
Substituted judgment standard	12
Best interests standard	12

Introduction

Working with patients and their loved ones when the patient has a condition that carries a medical prognosis of being incurable poses special ethical challenges. How should you, the health professional, treat such persons with the dignity they deserve? The terminology often encountered in the health care literature (e.g., terminal, fatal, irreversible, incurable) adds anxiety when health professionals use it in conversation with patients and their families. At the same time, your work with these patients can be the perfect opportunity to be a positive influence in their lives. For this and other reasons, we will address ethical issues that come sharply into focus when a person is going to die because of his or her medical condition. The current term in the literature and in practice that you will encounter is end-of-life care.

Throughout this textbook, you have been reminded of the importance of care in the ethics of the health professional–patient relationship. In no situation does this apply more than in the treatment of persons who are coming to the end of their life. Most health professionals want to convey to patients who have incurable illnesses, “I care,” and the examples in this chapter illustrate ways in which that message can be meaningfully conveyed. It requires a clear understanding of special ethical considerations that emerge in this type of situation, rigorous application of your technical competence, and personal adaptability to each patient. To help focus your thinking, consider the following story.

The Story of Almena Lykes, Jarda Roubal, and Roy Moser

Mrs. Almena Lykes is 42 years old and was diagnosed with amyotrophic lateral sclerosis (ALS) about 18 months ago. When she was admitted to the hospital with severe pneumonia and shortness of breath, she had some movement in her arms and could get around in the wheelchair. Despite physical, occupational, and respiratory therapy and good nursing care, she has become weaker since being hospitalized. Test results indicate that her pneumonia probably developed because of weakness of the swallowing muscles (which allowed aspiration of mouth contents into the lungs). She is discouraged, knowing that her condition is going to get progressively worse and that she will eventually die. She also believes that her husband is not willing to care for her at home any longer, a fact that the staff cannot confirm because he has not called or appeared since she was admitted.

After a 2-week course, Almena’s condition takes a decisive turn for the worse. Dr. Jarda Roubal, her physician, believes that she is not going to be able to bounce back from this pneumonia even with vigorous treatment with antibiotics and respiratory therapy because of rapid deterioration of her swallowing and breathing muscles. Dr. Roubal discusses the seriousness of her prognosis and the options open to her for interventions regarding her pneumonia (e.g., medications, respiratory therapy) and predicts that she is near to the time when she will have to make a decision whether or not she wishes to be placed on a ventilator permanently. He answers all questions directly about the seriousness of her prognosis. He asks her nurse, Roy Moser, to place a respirator in her room for quick initiation of ventilator support should it be needed.

Yesterday evening, Mrs. Lykes asked Roy to sit down with her by her bed. Tearfully, she told him that she really was ready to die. She requested that her treatments in physical, occupational, and respiratory therapy be discontinued and that she not be placed on a respirator unless it would mean she would suffer less while she was dying. She said she had seen a movie in which a woman was given morphine to speed up the dying process and make it painless and explained that was what she wanted. She also requested a Do Not Resuscitate (DNR) status. “Dr. Roubal means well, but he will make a vegetable out of me,” she says, breaking down. Roy said he would be sure to talk to Dr. Roubal about her wishes but that the final decision would be made by her and the team caring for her. Then Roy documented the conversation in her clinical record.

That evening when Dr. Roubal came through to check on the patients, Roy Moser took him aside and conveyed the whole conversation as best he could recall it. Dr. Roubal listened intently and said, “What do you think?”

“I think we should do what she suggests. She isn’t going to get better.”

After a moment, Dr. Roubal said, “Well, you are right about her not getting better, but I think she is depressed and once she gets on a respirator and over the pneumonia she will see it differently. She still has a lot of life in her.” Dr. Roubal then went to visit Almena. He said to her, “The nurse has told me about your concerns. I would like you to think it over. There’s still a lot we can do for you.”

Later that evening, Roy went back to Almena Lykes’s room. Almena looked extremely sad and alone, her eyes puffy from crying. Now she was dry eyed and made an attempt to lift her limp hand. “I don’t know what to do,” she said.

Before continuing, take a minute to think about Dr. Jarda Roubal’s and Roy Moser’s response to Almena Lykes.

Reflection

What is each doing to show a caring response to her problems?

Do you think one or the other is more correct in their judgment about whether to continue treatment? On what do you base your opinion?

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In this story, you can quickly discern by now that several important ethical dimensions of professional practice come into full view. As in previous chapters, we will guide you through the six-step process to highlight some of them, knowing that you may identify others.

The goal: a caring response

Suppose that you are Dr. Jarda Roubal or Roy Moser. It goes without saying that Mrs. Lykes deserves all the respectful consideration from you that you would give to any patient. She needs to feel confident that you are competent because her life literally may be in your hands. In a word, she expects you to give her your best attention consistent with a caring response.

As discussed in previous chapters, caring is a balancing act. The very purpose of your professional role is to be technically competent and show the appropriate personalized nurturing also necessary for true care. This becomes even more important in end-of-life care. The health professional who is committed to patient-centered care at end of life will do at least the following:

1. Maintain vigilant attention to clinical interventions appropriate for the person’s condition, whether preventive, rehabilitative, or comfort enhancing. The diagnosis of an incurable condition does not mean that the whole range of interventions may be prematurely dropped from the clinician’s resources for optimal treatment.

2. Take enough time to communicate with the patient (and loved ones) to get a “feel” for the person’s values, strongly held beliefs, habits, cultural and ethnic characteristics, and personality. This also helps facilitate discussion amongst patients, their support systems, and the care teams regarding how they would like to receive clinical information and handle decision-making tasks.

3. Listen carefully to what the person has to say. A focus on the patient’s quality of life governs you in your attempt to create a warm, personal environment. Only the patient’s (or if the patient is incapable of indicating preferences, the surrogate’s) interpretation of what makes life worthwhile counts, not yours or anyone else’s. Sometimes concerns that are important to the patient seem insignificant to a health professional.

4. Recognize that a patient’s perception of quality of life is fluid near the end of life. Many research studies (and clinical cases) verify the fact that perception of quality of life often undergoes revision as an individual’s condition evolves.1 Patients should be given information, choices, and control whenever possible.

5. Understand that the final phase of a condition brings with it a myriad of emotions. Patients facing end of life may experience shock, anger, fear, grief, denial, pain, and depression; others may express readiness or relief. In the words of Hank Dunn, “Facing the reality of death is like encountering a wide river that must be crossed . . . None of us can force one another across.”2 And not all patients believe there is another side. These emotions take time to process and work through. Patients need your comfort, patience, and assistance to effectively do so.

Reflection

What might you expect would weigh heavily on Mrs. Lykes’s mind right now?

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How can you respond in a warm and supportive manner to her concerns?

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Summary

A caring response in end-of-life situations requires apt attention to quality-of-life issues for the patient and family.

Palliative care

As we come to realize that health care includes the provision of comfort measures to people who are dying, and attempts at curative and restorative treatments until they are shown to be futile, the notion of palliative care becomes integral to a caring response. Palliation means to reduce the severity of or relieve symptoms without curing the underlying disease.3 Palliative care is patient-centered and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering.⁴ Palliative care is not limited to individuals with incurable conditions that lead to death, although that is the focus of our discussion.

Some objectives of palliative care include the following general guidelines:

• People with advanced, potentially fatal conditions and those close to them should expect and receive skillful and supportive care not focused on curing the patient.

• Health professionals must commit themselves to using their professional knowledge effectively to prevent and relieve pain and other disturbing symptoms.

• Health professionals should regain awareness and humility about what modern medicine can and cannot do so that patients can deal with their own death realistically, not as the enemy but as a part of life.

• Health professionals must recognize that the patient’s continuing downward course may be a time of anxiety for the health professional, too, which poses a challenge to the whole team.5

• Providing the best care possible means that as much imagination, competence, and energy must be directed to palliative interventions as would be devoted to care of a patient without an incurable condition.

Throughout the patient’s illness, the goal of providing the best palliative care possible includes giving emotional support to people closest to the patient. This helps encourage the patient, although you might find yourself frustrated with the patient’s relatives and close friends because they are angry and confused or feeling intense sorrow and may transfer their feelings to you. Their demands, worries, questions, and interference with treatment can be disconcerting, especially when their actions call into question your own best judgment or exacerbate your own anxieties about the patient’s plight. (This may be a good moment to review Figure 13-2, which lists the sources of stress families experience when faced with caring for a loved one with a chronic condition. The sources are similar when end-of-life care goes on over a period of time). Remember that any time the patient’s most intimate sources of support are alienated or harmed, the patient also inevitably suffers deleterious consequences. At best, family and close friends are a great assistance to your efforts; at worst, they should not be unnecessarily excluded from your support and deprived of relevant information. Although their behaviors differ according to culture and other family practices, they have a right to be included.⁶

In palliative care, stopping intense efforts to effect a cure must be coordinated with an even more intense effort to engage in a regimen of clinical intervention aimed at reduction of discomfort. The words of a talented physician some years ago still have great relevance today:

“Even when we decide that our advanced technologies are no longer indicated, we can still agree that certain extreme measures are indicated—extreme responsibility, extraordinary sensitivity, heroic compassion.”⁷

These words are especially valuable because often at the moment that you admit the person is indeed beyond medical intervention aimed at cure, you may momentarily feel at a loss as to how to continue to express your caring. We can imagine that Roy Moser had this feeling when he walked into Almena Lykes’s room and noticed she had been crying or when she confessed she did not “know what to do.” Your own imagination may be thwarted by the knowledge that the patient’s time is limited. This could deter you from setting attainable goals that may be of importance to the patient. Tonight is the future. Tomorrow is the future. Mrs. Lykes can be encouraged toward the goal of using the bathroom unassisted tonight or sitting up to write some letters tomorrow. Sometimes, too, patients are hesitant to offer information about their desires because they fear the goal will seem irrelevant or even silly to someone else. For example, one young woman confided to the chaplain that she longed to go to the chapel for religious services but was afraid it was too much work for the nurses to get her there. Another woman who needed large doses of pain-reducing medication told the medical technologist she was concerned that the “fuzziness” created by the medication would impair her judgment when her lawyer came to discuss her estate. The technologist relayed the information to the woman’s physician, and the physician arranged to have the medication withheld during the lawyer’s visit, with the grateful consent of the patient. Another aspect of palliative care is to adjust your approach according to the probable time left before the patient’s death. One has to be an artist of “good timing.” The person who senses that the end is near often will ask to be left alone with only a few select people or, in some cases, with no one at all. To be cheerfully intrusive at such times denies a person the need to determine the use of last moments. In contrast, to treat a person who may live for months or years with a slowly progressing illness as if he or she is about to die at any moment robs that person of the sense of belonging among the living. A balance is needed to plan and attend to life tasks amidst what may be an uncertain disease trajectory. A 42-year-old woman dying of a slowly progressing leukemia went into her local hospital for her monthly blood tests. A laboratory technician who had not seen her for several months greeted her by saying, “You still around?” The woman told her husband later, “She was just teasing, but it made me feel funny—like maybe I was supposed to have died already or something.”

Anyone who has experienced the ordeal of a loved one’s prolonged dying knows that some of the tensest moments are those related to not knowing how long the person will be alive, to being afraid that one will prematurely die, and to not knowing how to make appropriate plans for the future. The art of palliative care includes being as sensitive as possible to the time frame the patient and family are living with and adjusting your own approach accordingly.

Hospice care

One highly successful alternative for patients with conditions beyond medical cure is hospice, which originated in England and has spread to many countries in the world.8 Hospice care focuses the entire staff and institutional structure toward maintaining the patient in as comfortable, pain-free, alert, and humane an environment as possible.⁹ Hospice teams are interdisciplinary. They recognize the dying process as a part of the normal living process and provide support and care for the patient during this phase. Hospice programs provide a unique set of benefits for patients and their families. Evidence shows improved pain assessment and management, improved bereavement outcomes, better overall satisfaction, and lower mortality rates among family members of patients who received hospice care.¹⁰ Patients are generally eligible for hospice when they forgo curative treatment and have a life expectancy of 6 months or less, although as the concept continues to evolve, these regulations may change.

Summary

Palliative care has many dimensions, among them your concerted effort to maximize quality of life through decreasing physical, psychological, and emotional pain and attending to the patient’s own timing and life situation.

Now that we have laid the general groundwork for what a caring response entails in this type of situation, we invite you to turn to the by now familiar process of ethical decision making to consider Almena Lykes’s story in more detail.

The six-step process in end-of-life situations

The art of caring requires that health professionals be keenly aware of when the moral aspects of the relationship hit a snag and an ethical problem appears.

Reflection

Do you think Dr. Jarda Roubal and Roy Moser are faced with an ethical problem? If so, jot down why or why not and how their respective roles as physician and nurse are similar and different.

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We believe they do have an ethical problem, given the seriousness of Almena Lykes’s clinical condition. The life or death decision about life-prolonging measures must be negotiated to her satisfaction, and her present anxiety must be taken seriously into account. We begin here by reviewing the salient facts of her story to help highlight some details of the problems in her particular situation.

Step 1: gather relevant information

The most important fact we have is that Mrs. Lykes has a progressive, incurable condition, the pathology of which will continue to cause her muscles to grow weaker. She will experience greater functional impairment and ultimately failure of her heart and respiratory muscles. She will lose control of her throat muscles, resulting in an inability to swallow. Eventually, she will die of her condition.

Dr. Jarda Roubal is monitoring this clinical course and trying to maintain her respiratory functions. Roy Moser is a central, coordinating figure of the team of therapists, technologists, and others who gauge how various interventions are helping to maintain the health she has remaining. They also are trying to stay in touch with her feelings and keep her optimally functioning and comfortable. We know that all three of the key players in this story are at a crossroads. Should Mrs. Lykes’s expressed wish to give up now be honored, or should the health professionals listen to her confusion in the lonely evening hours and again encourage her to hang on? Dr. Roubal will be the one to make the final call, medically speaking, about how to proceed with technologic and medical interventions. However, from an ethical viewpoint, that call must be made with as much certainty—and in as much accord with Mrs. Lykes’s real wishes—as possible.

One key to her suffering is that she may be abandoned by her husband and may be (or already is) left alone by someone she deeply counted on. The fear and reality of such abandonment is common enough that it warrants your further consideration here. Almena, like many patients who face death and dying, may fear isolation, pain, dependence, and the family’s response to her deteriorating condition. Not only do patients experience betrayal from their own body, they often experience physical and emotional betrayal from those closest to them. Some patients like Almena with progressive neurologic conditions may feel they are living with dying. This awareness of death can prompt one to reflect on life’s meaning and to seek closure in personal, practical, and spiritual matters.10

Abandonment: a patient’s reasonable fear

Almena Lykes knows that things are not going to get better, clinically speaking. We have just mentioned how sometimes spouses, other loved ones, and friends fall away during the patient’s process of dying. Some challenges that face family and other loved ones in regard to their role during a long-term course were mentioned in Chapter 13. Mrs. Lykes has a chronic, disabling, and incurable condition. For whatever reason, Mr. Lykes has disappeared; it is not possible to ascertain whether his absence is because of fear, weariness, disgust, or anger at her situation, or his own pathology.

In addition to abandonment by loved ones, patients also sometimes detect that health professionals are distancing themselves, which exacerbates the patients’ anxiety and suffering. Health professionals seldom physically abandon patients who have an incurable medical condition. Sometimes, however, they are caught in policies that prevent them from giving a patient as much of or the type of treatment the professionals believe that person needs. For instance, in the United States, some health plans have been accused of shortchanging patients by not paying for needed treatment for some groups.⁵ Because health plans vary widely in their practices, you should check out the conditions of your employment site before signing a contract so as not to be forced into what seems to be abandonment by policy dictate.

Psychological abandonment is the greater danger that sometimes leads a health professional to physical neglect of the patient. Why? For one thing, their concepts of what health care interventions should accomplish may lead professionals to distance themselves because the patient continues to “get worse.” Others are repulsed by the appearance, smells, or other disturbing manifestations of a patient’s condition.¹¹ Psychological preparation for the pain of loss when a patient dies is advisable, and sometimes health professionals distance themselves to protect against the pain of that loss and feeling of failure. But psychological abandonment is distancing that far exceeds the use of necessary defense mechanisms. It follows that no matter what Mrs. Lykes’s husband chooses to do, the responsibility for not abandoning her also falls on Dr. Roubal, Roy Moser, and the other health professionals working with her. Together they can support each other to overcome their tendency to abandon her physically or psychologically.