Dr. A is sitting at home enjoying dinner when the phone rings. The caller is Mr. B, an acquaintance. He is distraught. He asks how much air must be injected into an intravenous line to cause a person to die. When asked why he wants to know, he explains that his 72-year-old father, currently a patient in a local hospital, has end-stage metastatic lung cancer and is in excruciating pain. Mr. B cannot bear to see his father in such pain and wants to end his suffering by means of an air embolism.
Mr. C, a 68-year-old man with a 100 pack-per-year history of smoking and known chronic obstructive pulmonary disease, presents to the emergency department with pneumonia and respiratory failure. He has been intubated four times before for respiratory failure. He uses oxygen at home and is dyspneic at rest. He has hypoxemia, hypercapnia, and is delirious. The emergency physician, Dr. D, tries to stabilize his condition with oxygen, bronchodilators, steroids, and non-invasive ventilation, but Mr. C’s respiratory status worsens. Dr. D cannot locate Mr. C’s family. She calls Mr. C’s family physician and respirologist to find out whether they have ever discussed re-intubation, but unfortunately neither has done so. Although she is uncomfortable with this situation because of the uncertainty about the patient’s wishes, Dr. D decides to perform the intubation.
A clinician who receives a call from the emergency department to see a patient with heart failure will have a clear concept of what heart failure is, as well as a framework within which to approach the condition and its management. Unfortunately, clinicians may not have an analogous conceptual framework for approaching end of life care. Several aspects of end of life care are addressed in other chapters, especially those on truth telling, consent, capacity, substitute decision making, advance care planning, euthanasia and assisted suicide, and conflict in the healthcare setting at end of life. Care of patients at the end of life is best provided by, or in consultation with, clinicians with expert training in palliative care. The World Health Organization (WHO) defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” (http://www.who.int/cancer/palliative/definition/en/). However, in practice, much care for dying patients is provided by other physicians and healthcare workers. By “quality end of life care” we mean a coherent conceptual framework that clinicians can use to approach the care of patients at the end of life. It is a term that pulls together concepts that previously had been fragmented across fields such as bioethics and palliative care. We also want to emphasize that quality of care for patients at the end of life is just as important as at other times, although historically this has not been mirrored in the care patients receive. A framework for quality end of life care is described in greater detail on p. 55. It has three main elements: control of pain and other symptoms, decisions on the use of life-sustaining treatment, and support of dying patients and their families. These elements are based on empirical research described in the relevant section below.
From an ethical perspective, beneficence requires that pain and other symptoms be controlled. The legal status of control of pain and other symptoms is not absolutely clear, but clinicians should not risk legal peril if they follow established guidelines distinguishing these practices from euthanasia. (Hawryluck et al., 2002). Advance care planning is used to justify much decision making at the end of life and is ethically supported by respect for autonomy and is legally recognized in most Western countries. Decisions by patients or substitute decision makers to withhold or withdraw life-sustaining treatment proposed by a clinician are also supported by the ethical principle of respect for autonomy and the legal doctrine of informed consent (Etchells et al., 1996a, b; Lazar et al., 1996). In contrast, the ethical and legal issues related to inappropriate use of life-sustaining treatments demanded by patients and substitute decisions makers over the objections of physicians are not as clear (Weijer et al., 1998). Both euthanasia and assisted suicide are illegal in all but a few jurisdictions (see Ch. 11 for more information).
Advocates have framed end of life care as an issue in healthcare quality: a positive development in that it focuses organizational commitment to quality on the problem of end of life care. But what does quality end of life care entail? The WHO definition of palliative care cited above was the earliest attempt to describe what was needed for patients facing death. The Committee on Care at the End of Life of the US Institute of Medicine, National Academy of Sciences, has proposed the following six categories of quality end of life care: overall quality of life, physical well-being and functioning, psychosocial well-being and functioning, spiritual well-being, patient perception of care, and family well-being and perceptions (Field and Cassel, 1997). The National Consensus Project Clinical Practice Guidelines for Quality Palliative Care built upon these categories (National Consensus Project, 2005). This document, endorsed by all major US palliative care organizations, defined the following aspects of care as critical to quality: structure and processes; physical, psychological and psychiatric, social, spiritual, religious and existential, cultural care of the imminently dying patient; and ethical and legal aspects of care.
Although euthanasia has often consumed the attention of the media, the critical ethical issues vexing clinicians, patients, and families lie elsewhere. Singer et al. (1999) published a study identifying the domains of quality end of life care from the patient’s perspective: this can be seen as the evidence basis for the approach outlined below. In a survey of 1462 patients, bereaved family members, and healthcare providers, the following factors were considered of greatest importance at the end of life: pain and symptom management, preparation for death, achieving a sense of completion, decisions about treatment preferences, and being treated as a “whole person” (Steinhauser et al., 2000). Respondents ranked freedom from pain and being at peace with God as most important. Unfortunately, pain is often poorly managed (Portenoy et al., 1992; Cleeland et al., 1994; SUPPORT Principal Investigators, 1995). In one study of older patients who were conscious during the last three days of life, 4 in 10 had severe pain most of the time (Lynn et al., 1997). Decision making is also problematic. In a survey of physicians and nurses at five US hospitals, 47% of respondents reported that they had acted against their conscience in providing care to the terminally ill, and 55% reported that they sometimes felt the treatments they offered patients were overly burdensome (Solomon et al., 1993). Consistent with the recent focus of policy efforts, quality-improvement strategies have been applied at the organizational level to the problem of end of life care (Baker et al., 1998; Cleary and Edgman-Levitan, 1997). For example, a randomized, controlled trial examined the effect of a clinical care path containing ethics consultations on the outcomes of seriously ill in intensive care units patients (Schneiderman et al., 2003). The intervention resulted in more rapid withdrawal of life-sustaining treatments, with increased provider and patient surrogate satisfaction. Processes such as these or, for instance, focusing traditional “morbidity and mortality rounds” on quality end of life care, can change the culture within an institution such that quality healthcare includes attending to the needs of dying patients.
To address this question, we recommend a conceptual framework with three main elements: (i) control of pain and other symptoms, (ii) decisions on the use of life-sustaining treatments, and (iii) support of dying patients and their families. We do not believe that a conceptual framework will magically solve the documented problems in end of life care; we do, however, believe that this is an important step.
No patient should die in pain or with other treatable symptoms. Indeed, before social, psychosocial, and spiritual problems can be properly addressed, good symptom control must first be achieved: it is difficult to contemplate spiritual issues or to reflect on life’s accomplishments when in pain or with kidney basin in hand. The undertreatment of pain and other symptoms is well documented, but aside from inadequate training of health professionals (Von Roenn et al., 1993; MacDonald et al., 1997), the causes are complicated and not well understood. On occasion, clinicians may be concerned about balancing good symptom control with the risk of hastening death. Guidelines have been developed to assist clinicians in distinguishing appropriate analgesia from euthanasia by lethal injection (Hawryluck et al., 2002). Controlling other symptoms, such as nausea, fatigue and breathlessness, may be even more challenging than controlling pain, but effective approaches have been developed (von Gunten, 2005). Clinicians must keep in mind that the problems of dying patients have their genesis at an earlier time in the trajectory of illness. Therefore, palliative care should not be isolated as simply an end of life option; it must be intermeshed with therapies aimed at prolongation of life or cure. As in other areas of medicine, prevention or early control of a symptom is preferable to a rescue attempt on preventable, but now out of control, suffering. All clinicians who care for dying patients should ensure that they have adequate skills in this domain, as well as access to skilled consultative help from palliative care specialists.
To the extent possible, patients and their families should be able to choose the site and nature of the care that the patient will receive in the last days of life and should be encouraged to discuss in advance their desires regarding life-sustaining treatments and personal care. Clinicians should facilitate this advance care planning (Teno et al., 1994; Emanuel et al., 1995; Singer et al., 1996, 1998; Martin et al., 1999) and guide and support the patient and the family through the process of giving consent to treatment and arranging for substitute decision making (Lazar et al., 1996). A key skill here is empathic communication with patients and families (Tulsky, 2005). In addition, physicians need to develop an approach to the opposite problem when the patient or the family demands treatment that the physician feels is inappropriate (see Ch. 12). Another key skill here is the ability to negotiate a treatment plan that is acceptable to the patient, the family, and the healthcare team (Fisher and Ury, 1991).
The support that each patient and his or her family needs from the clinician is unique. The best way to find out what support will be appropriate in a particular situation is to use reflective listening skills and to be available to help. Attention to psychosocial issues demands involvement of the patients and their families as partners. Although clinicians should be sensitive to the range of psychosocial distress and social disruption common to dying patients and their families, they may not be as available or as skilled as nurses, social workers, and other healthcare professionals in addressing certain issues. An interdisciplinary healthcare team can help in these areas. Spiritual issues often come to the fore as one is dying, and pastoral care teams and other interventions should be available to assist the patient’s own clergy in counseling (Chochinov and Cann, 2005). A simple question such as “Are you at Peace?” may identify those patients with spiritual suffering (Steinhauser et al., 2006). Although not all families need or desire follow-up after the death of a loved one, many appreciate a letter or a telephone call from the physician or a member of the palliative care team (Bedell et al., 2001). Some families will need more specific help. Clinicians should be sensitive to risk factors for poor adjustment to bereavement and should be knowledgeable about local bereavement services (El-Jawahri and Prigerson, 2007).
Both of the cases presented at the beginning of this chapter represent failures in end of life care. In the first, inadequate pain control led to a desire for euthanasia. What was needed was not an air embolism but better pain control. When this was achieved, Mr. B was relieved and did not pursue the idea of euthanasia. This case also illustrates that physicians should not take requests for euthanasia at face value; rather, they should explore and address the suffering that might have led to such requests. The second case represents a failure of communication about life-sustaining treatments. Mr. C had end-stage lung disease and had been intubated four times previously, so he was ideally situated to know whether he wanted to undergo the procedure again. Indeed, it is very likely that he had considered this possibility. If he did want intubation, knowledge of his wishes would have relieved Dr. D’s anxiety. (Although death was looming, it would be difficult to claim that intubation would be futile in this case, given that it had worked before.) If Mr. C did not want to undergo intubation, he missed his opportunity to communicate this desire. Arguably, the family physician and the respirologist should have broached this issue with him and helped him to make his wishes known in such a way that they would be effectively communicated when respiratory failure occurred.
In summary, physicians caring for patients at the end of their lives should ask themselves three questions. Am I managing this patient’s pain and other symptoms adequately? Have I addressed the relevant issues with respect to the use of life-sustaining treatment? Am I supporting this person and his or her family?
An earlier version of this chapter has appeared: Singer, P. A. and MacDonald, N. (1998). Quality end-of-life care. CMAJ 159: 159–62.