Ethical Treatment of Dying Patients

Communication for Closure

As discussed in a previous blog, the dying process is often filled with challenging, ethically complex decisions. Because dying is a highly personal event, it is frequently dominated by confusion regarding preferences and choices that must be made in relation to the physical, psychological, social, and existential aspects of the dying experience. In making these decisions, terminally ill patients need options that balance the ethical obligation of respecting each patients long held beliefs, values, cultural mores, practices, and patterns of living; while ensuring that ill informed choices do not jeopardize their welfare (Fisher, 2013, p.132). The safest way to achieve Standard 3.04 Avoiding Harm, and uphold dignity, autonomy, and the aspirational principles of Beneficence; Nonmaleficence; and Justice, lies in open dialogue and communication with patients, their families, and with colleagues from various health care and other professions (Latimer, 1991). Using Standards on Human Relations; Assessment; Therapy; and Competence, as guidelines for exchanges of information, as well as for participating in a “caring conversation”, care givers can gauge the moral acceptability of various practices with patients at the end-of-life.

 

When initiating and sustaining discussion about end-of-life care, caregivers must be prepared to shepherd the patient through many of the clinical and ethical challenges that characterize this last phase of life (Quill, 2000). They have a responsibility to deal with human beings as they are. People only die once and they have no experience to draw upon (Gawande, 2010). Patients need a care team who is willing to have the hard discussions, say what they have seen, and whom will help them with what is to come (2.01 Boundaries of Competence). Fundamental to the success and integrity of both parties in the patient-professional relationship is “gentle truth-telling” - to the extent that patients require and indicate that they can tolerate (Latimer, 1991). Patients need to know about their condition and prognosis, their choices in courses of action, and the likely outcomes of these choices (Quill, 2000).  Additionally, not only do they need to know the reality of their situation, they need to have it communicated in a kind but accurate manner. Deceit, no matter how kindly motivated, leads to despair (Latimer, 1991). (3.04 Avoiding Harm) This accurate information gives patients not only control over their body and their life, by choosing their form of treatment, it gives them an opportunity to do and talk about things that are important to them (complete a will, heal family relationships, get finances in order, say their goodbyes, and prepare themselves for death). When a patient is unaware that death is approaching, these issues may be left unattended to. A constant source of anger and frustration voiced by bereaved relatives is that no one sat down and discussed the fact that their loved one was dying (Ellershaw & Ward, 2003). Standards of importance in these areas are: 9.01 Bases for Assessment, 9.02 Use of Assessment, 9.03 Informed Consent in Assessments, 9.06 Interpreting Assessment Results, 10.01a Informed Consent to Therapy, and 10.01b Anticipated Course of Therapy.

Conversations for Information

 

The primary purpose of these discussions with terminally ill patients is to determine what people want. Although the focus is on laying out facts and options, the larger part of the task is in helping people negotiate their overwhelming anxiety; “anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances” (Gawande, 2010, p19). There are many worries and real terrors; people worry that no one is listening and fear dying with unnecessary pain and suffering (Quill, 2000). Routine conversations about end-of life preferences and wishes work to normalize these discussions, educate clinicians about patient’s goals and values, and allow the patient to learn about their rights to palliative care.

Although conversations about end-of-life care are difficult to initiate, one would think clinicians would be well equipped to navigate these waters. Unfortunately, this is not always the case. Patients, their families, and clinicians, frequently avoid mentioning death or dying; even when the patient’s suffering is severe (Quill, 2000).  One factor undermining successful end-of-life discussions is; because of the availability and reverence for medical technology in health care, one does not always know when dying begins and when death is likely to occur (Gawande, 2010). There is reluctance by doctors to diagnosis dying, even when pressed, as they feel there is always something more that can be done. They have not been trained to care for dying patients and therefore feel helpless (Ellershaw & Ward, 2003). Many times, as they feel ill prepared to have a conversation on the subject of mortality, their solution is to avoid the subject altogether (Gawande, 2010).  Instead of conversations consisting of options for palliation of symptoms and end of life closure, discussions revolve around fantasies of inappropriate medical treatment they know are unlikely to work, many with the likelihood of causing debilitating side effects. (Standards: 2.01 Boundaries of Competence and 2.01b, When to Refrain and Refer, 2.04 Bases for Scientific and Professional Judgments)

 

The “breakpoint discussion" (Gawande, 2010, p.21), is a systematic series of conversations to sort out when the need arises to switch from fighting for time to fight for the other things people value: being with family, travel, whatever is important to the individual. Additionally, the notion of personal dignity many change across different stages of the illness. Latter discussions of treatment strategies may be distinctly different from those originally agreed upon. Effective communication between patients, families, and health care providers is essential to avoid moral conflicts regarding changes or termination of therapies when it becomes reasonably clear that the patient no longer needs the services; they are not likely to benefit; or they are being harmed by continuing the services (Fisher, 2013, p.317). (3.04 Avoiding Harm, 10.01b Ongoing Nature of Consent and 10.10 Terminating Therapy)

 

Conversations on Advance Care Planning are one way to increase an individual’s autonomy in the final stages of life (Gallacher, Hughes, & Kleespies, 2000). Documentation of living wills, preferences of life-sustaining medical treatment, and medical power of attorney, are attempts to determine the type of care a patient would want if they cannot speak for themselves (Last Acts, 2002, p.9). (3.10b Informed Consent) In the discussions of these preferences, an awareness of the patient’s cultural, ethnic, and religious background is critical, as these contextual issues may profoundly influence decisions (Quill, 2000). (2.01b Boundaries of Competence) Honoring terminally ill patients treatment preferences for Do Not Resuscitate (DNR), Do Not Intubate (DNI), and palliative health care goals (whether to withhold artificial feeding and fluids or to administer antibiotics), preserves an individual’s control and dignity. Although the Patient Self-Determination Act (PSDA) requires health care facilities receiving Medicare or Medicaid reimbursements to inform patients about their right to make choices about the treatment they receive and to prepare advance directives (10.01 Informed Consent to Therapy), a study of terminally ill patients found that two-thirds had no discussion with their doctors about goals for end-of life care; despite being 4 months from death (Gawande, 2010).  Furthermore, the third that did were far less likely to undergo cardiopulmonary resuscitation, be put on ventilator, or end up in an intensive care unit. Of the two–thirds in the study who enrolled in Hospice, it was shown that these patients suffered less; were physically more capable; and were better able, and for a longer period of time, to interact with others. Also, six months after death, family members were less likely to experience persistent major depression. In other words, people with substantive discussions about end-of life preferences were “far more likely to die at peace and in control of their situation and to spare their family anguish” (Gawande, 2010, p.17).

 

 Conversations for Caring

 

The first step for those close to the dying patient in broaching these conversations, is to learn to relinquish control (Jacelon & Proulx, 2004). Health care providers and families of the patient are reluctant to accept that a dying individual’s priority may be for relief of spiritual suffering, rather than technologically advanced medical care. Suffering is not solely defined by physical, or even mental pain, but by the reduction in the capacity for being able to act; which is experienced as a violation of self-integrity (Eriksson & Fredriksson, 2003). Care providers need to take the time to listen and to learn about the patient’s unique suffering, and about what is being requested by them. The patient is the initial guide to defining their problems and the range of interventions and solutions they find acceptable (Quill, 1993). One needs to learn about what is most important to each patient under the circumstances; what their concerns are about what lies ahead, how they want to spend their time as options become limited, and what kinds of trade-offs they are willing to make (Gawande, 2010

Fully understanding the depths of a patient’s concerns requires as much listening as talking. Gawande (2010, p.20), states “If you are talking more than half of the time, you are talking too much”. Many times patients themselves are reluctant to express (or are not even aware of), the real issues troubling them. Statements such as “I wish I were dead” are often expressions of anger, depression, or of simply being tired of acute medical treatment (Quill, 1993). In fact, even when operating under the Oregon Death with Dignity Act (ODDA), which permits physicians to prescribe lethal doses of medication to hasten the death of competent, terminally ill patients who voluntarily request it (Gallacher, Hughes, & Kleespies, 2000); it was found that requests of assistance in dying only rarely evolved into fully considered requests for physician assisted suicide when a thorough exploration and understanding of a patient’s experience was undertaken, and other interventions (pain control, symptom relief, hospice referral, prescribing of anti-depressant or anti-anxiety medication, consultation with a chaplain), were offered (Delorit, Ganzini, Kraemer, Lee, Nelson, & Schmidt, 2008).  
   
In these final conversations of uncovering a patient’s last wishes, the words you use matter. You don’t ask, “What do you want when you are dying?” You ask, “If time becomes short, what is most important to you?”(Gawande, 2010, p.20).  Questions also need to be clarified with statements such as “How were you hoping I could help”, “What is the worst part”, and “What is your biggest fear” (Quill, 1993, p.870). With this knowledge, care providers can act upon the decisions a patient conveys during these discussions, to ensure the focus is on the best interests and wishes of the patient (Latimer, 1991). Not only does this help to prevent the imposition of others’ values (3.06 Conflict of Interest and 2.06 Personal Problems and Conflicts), it allows information and advice to be provided on the approach that will give each patient the best chance of achieving the death they want.  More importantly, the end does not come without having a chance to say “Good-bye”, “It’s OK”, “I’m sorry”, or “I love you”.

Excellent article from The New Yorker on "Letting Go":
http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=all

References 

Delorit, M., Ganzini, L., Kraemer, D.,  Lee, M., Nelson, H., & Schmidt, T. (2008). Physicians' experiences with
           the Oregon death with dignity act. New England Journal of Medicine, 342(8), 557-563.
Ellershaw, J., & Ward, C. (2003). Care if the dying patient: the last hours or days of life. BMJ, 326, 30-34.
Eriksson, K., & Fredriksson, L. (2003). The ethics of the caring conversation. Nursing Ethics, 10(2), 138-148.
Fisher, C. (2013).  Decoding the ethics code (3rd ed.). Thousand Oaks, CA: SAGE Publications, Inc.
Gallacher, F., Hughes, D., & Kleespies, P. (2000). Suicide in the medically and terminally ill: Psychological and
           ethical considerations. Journal of Clinical Psychology, 59(9), 1153-1171.
Gawande, A. (2012, August 2). Letting go. The New Yorker. Retrieved from
           http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=all
Jacelon, C., & Proulx, K. (2004), Dying with dignity: the good patient versus the good death. American
           Journal of Hospice and Palliative Medicine, 21, 116-120.
Last Acts (2002). Means to a better end: A report on dying in America today. Washington, DC.
Latimer, E. (1991). Caring for seriously ill and dying patients: the philosophy and ethics. Canadian Medical
           Association Journal, 144(7), 859-867.
Quill, T. (1993). Doctor, I want to die. Will you help me? Journal of the American Medical Association,
           270(7), 870-873.
Quill, T. (2000). Initiating end-of-life discussions with seriously ill patients. Journal of the American Medical
           Association, 284(19), 2502-2507.