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5.1 Appropriate Use of Life-Sustaining Treatments

UNDER REVIEW - The following three cases are under review (5.1 / 5.2 / 5.4) in light of the Supreme Court decision in Carter v. Canada (Attorney General), 2015 SCC 5. (Date: 2015/02/06).

Natalie Bandrauk, MD, MSc, FRCPC

Learning Objectives

  1. To recognize the importance of discussing reasonable goals of care at the end of life
  2. To review the ethics of withholding and withdrawing life-sustaining treatment
  3. To consider the challenges and strategies of discussing and providing high quality end-of-life care in acute care situations

Case

A 90-year-old man arrives in the emergency room by ambulance. At the original scene of the emergency, the patient was unresponsive, blue and asystolic. Cardiopulmonary resuscitation was begun, and a weak pulse was regained en route to the hospital. The patient had choked on food, and the paramedics are having trouble bagging him. As the emergency room physician, you do your preliminary survey (ABCs) and remove the food from the airway. The patient is unresponsive but has a rhythm and a low blood pressure.

What do you think should be done? Why?
What other information might be relevant to your decision-making process?

The ambulance record shows eight minutes between the call and the paramedics' arrival on the scene, and a few more before a rhythm was obtained.

Does this information change your plan?

According to the man's 89-year-old wife, when the patient choked he started to gasp but then fell limp. With the assistance of a home care worker, she laid him on the floor and tried to stimulate him. It was about five minutes before they called 911.

At baseline, the patient required home care because of decreased mobility and had some memory loss.

Questions

  1. What moral principles come into play in this scenario?
  2. Is there a difference between withholding and withdrawing a treatment?
  3. How do you approach the family, and what should you discuss with them?
    1. Why might the physician recommend conservative care?
    2. Why might a family wish to withdraw life-sustaining treatment? Why might a family request aggressive care?
    3. Why might the physician agree to continued aggressive care?
    4. What approaches have you witnessed that worked well in such situations, or what approaches have not worked?

Discussion

This case should be used as a starting point to consider and to navigate through the different options provided by modern medicine, the justifications for choosing a certain path and the different viewpoints that might lead to a different path. The goal is to learn how to work with patients and families to achieve good end-of-life care and to avoid conflict, rather than assuming it is there and practising defensive medicine. When families are approached in such situations, responses can be unpredictable. It is important to have an approach and to anticipate several issues the family may raise.

Q1. What moral principles come into play in this scenario?

End-of-life care is one of the areas where many principles of medical ethics come together. Patient autonomy means that physicians have a duty to "ascertain wherever possible and recognize... patient's wishes about the initiation, continuation and cessation of life-sustaining treatments."1 Patients have a well-recognized right to informed consent, and this includes the right to refuse any treatment. This right has been specifically recognized to exist even if the withdrawal from or refusal of treatment may result in death.2 Appropriate end-of-life care therefore respects a patient's right to refuse life-sustaining treatment. Beneficence and non-maleficence require physicians to recommend only those treatments that may be beneficial to their patients and to take all reasonable steps to prevent harm. The principle of beneficence also requires physicians to alleviate suffering with adequate pain control and support. Therefore, appropriate care at the end of life should confer some benefit and avoid harm. The provision of adequate palliation � including physical, mental and spiritual comforts � is, however, always appropriate. This is the standard of care.1

Occasionally, these principles come into conflict at the end of life. And it is less clear whether autonomy supports a right to demand a treatment that is felt to be beyond what medicine is willing to offer. The dispute becomes even more complex when you consider that the terms used to define the standard of care, namely "benefit"� and "harm,"� are themselves so value-laden that, but for the extreme case of when the treatment simply cannot work (physiological futility), it is all about burden-benefit judgments. The notions of benefit and harm may have very different meanings for patients, families and health care providers. For instance, one party may see value in simply attempting resuscitation, whereas those who do not feel there is a realistic chance of survival may view the same act as producing only harm. There is no moral or legal consensus on what appropriate care is when such disagreements occur or on who has the final say. Rather, after years of debate, the standard of care has become to adopt institutional conflict resolution policies and to address each case on its merits in the hope of achieving a negotiated plan in the patient's best interest.

Justice refers to providing each person with what is due or owed to her or him that can be legitimately or fairly claimed. Patients, physicians and society at large all have a stake in the provision of life-sustaining treatment. While the duty of previous generations of physicians was always to put the well-being of patients first, more contemporary codes of ethics have included an injunction to use health care resources prudently and to be good stewards of our health care dollar.1 Such resource issues are real and important in the day-to-day functioning of a hospital and, in particular, its critical care units, and they affect the population it serves. It is generally accepted, however, that rationing is a social discussion about the just allocation of resources and should not take place at the bedside. Decisions regarding a patient's worthiness for receiving life-sustaining treatment should be based on the patient's medical status, the patient's potential to improve, and his or her wishes. Offering only appropriate care at the end of life does, however, support both duties.

Q2. Is there a difference between withholding and withdrawing a treatment?

In many cases, a physician is presented with the need to provide immediate life-sustaining treatment with very little information. There is often a perceived dilemma between needing to get more information to best serve the patient and fearing that a treatment course must be followed once it has begun. Families may echo this sentiment, with the perception that it is emotionally more difficult to agree to the withdrawal of a treatment than to withhold it. It is, however, widely accepted that there is no moral or legal distinction between withholding and withdrawing an inappropriate treatment. A life-sustaining treatment is generally meant to be used as a bridge of support so that the body can return to an acceptable level of health. If the "treatment"� cannot achieve its goal � or if it is not wanted � then it is not appropriate either to initiate it or to continue it.3 The underlying disease process is what leads to the patient's death, not the action of withholding or withdrawing a treatment.

Q3. How do you approach the family, and what should you discuss with them?

The most important point that this case highlights is the need for meaningful conversation at the end of life to help direct appropriate therapies. It is only through effective communication that medical impressions can be imparted, that patient preferences can be ascertained and that expected outcomes and quality of life can be considered. Discussions about end-of-life care can be difficult. They are best held ahead of time, but happen all too often at a critical juncture, such as in the middle of the night and when life and death lie in the balance. If time permits, talk first and act later; there is almost always time. The setting is important for such highly charged discussions. A private, quiet environment where everyone can sit is best. In such situations, it is also important to clarify who is the substitute decision-maker. That person may need to be reminded that it is the patient's wishes, values and best interests that must be represented and not his or her own. Similarly, physicians will also bring their own value judgments into such discussions, and it is important to respect the patient's perspective. Ask about an advance directive, and ask not just what it says but what it means. Ask about the patient's goals, premorbid quality of life and satisfaction with it, and what outcomes would be acceptable to the patient � all value judgments that are generally understood to be the patient's to make � and then offer only what can realistically support these. Offer an opinion, a reasonable plan, including reassurances of comfort and quality end-of-life care.4

Q3a) Why might the physician recommend conservative care?

In this case, there are many factors that might make one consider conservative measures even while providing early resuscitative care. The patient's age, his premorbid status, and the nature and magnitude of the insult all contribute to the likelihood of a poor outcome. Beyond considering whether the patient would actually survive such an insult, the physician should consider multiple levels of possible morbidity. If the patient survives, it is highly unlikely that he would return to his baseline and thus would be more dependent, likely requiring institutionalized care. This may or may not be a goal that he would consider acceptable. There is a need to recognize the end of life when it presents itself, to recognize that not everyone wants to be saved or should be. It is the responsibility of all health care workers to provide beneficent and non-maleficent care, and at the end of life, this means the best death possible (and sometimes the least "worst" death).5

Q3b) Why might a family wish to withdraw life-sustaining treatment? Why might a family request aggressive care?

An agreement to withdraw life-sustaining treatments may be reached for any number of reasons: the patient may have a clear advance directive that outlines specific wishes and limitations; there may have been verbal communications to family members regarding end-of-life care; the family may understand the poor prognosis and compromised outcome despite aggressive care; and the family may not wish to see their loved one suffer through a protracted illness.

Despite counselling, however, some families may disagree with the proposed plan. They may feel uncomfortable and guilty about withdrawing life-sustaining treatment. They may cite hope, religious belief or disbelief of medical prognosis as reasons for wanting aggressive care. They may feel overburdened and paralyzed by their role in a decision to withdraw life-sustaining treatment. It is important for physicians to anticipate some of these challenges and to help guide families through this time of crisis. Offering a second opinion and enlisting hospital resources such as social workers, clergy, palliative care and ethics consultation can also help to achieve an understanding with the family.

The family may also insist on aggressive treatment because it is their understanding that the patient may have "wanted everything done." In such cases, it may be appropriate to say "No." True autonomy is not about offering patients to pick from a proverbial shopping list of what medicine can do, but about clarifying reasonable goals of care and offering only the treatments that can realistically achieve them.6 Providing a treatment when it is unlikely to lead to an acceptable outcome for the patient does not promote autonomy, but only false hope and confusion. While medicine does not have a crystal ball to know any outcome for certain, it is not entirely ignorant either, and it is important to counsel and guide patients and families in the decision-making process.

No clear ethical or legal consensus exists on how to address demands for inappropriate medical treatments. Many ways of where to draw a line regarding inappropriate treatments at the end of life have been suggested: from predictions of what will or will not work, to predictions of what outcomes and expected quality of life are worth pursuing, to what outcomes are cost-worthy of pursuit. Despite these attempts, consensus for a definition of medical futility remains elusive.7 However, the concept of futility and the heavy debate it has sparked should remind physicians of the importance of the process of shared decision-making. The standard of care is a due process of communication and mediation found in institutional conflict resolution policies. If challenged legally, the courts will primarily seek to clarify whether the standard of care has been provided.

3c) Why might the physician agree to continued aggressive care?

Occasionally, it may be appropriate to negotiate a time-limited trial of treatment. In some cases, this may be considered to address the inherent uncertainty of a patient's prognosis. Sometimes this is a compassionate gesture to allow time for discussion and understanding, for grieving, or for family members to arrive and say goodbye. The extra time can be useful for both family and health care providers to consolidate the futility of the situation. When conflicts do arise, the perceived path of least resistance may be to acquiesce to requests for "disputed" care plans. As discussed earlier, a physician's responsibility is to advocate for the patient and to do no harm. If a treatment plan cannot confer benefit, then the interventions to prolong life cause undue harm. As a moral agent, the best course of action is to enlist the help of the conflict resolution process in the hope of achieving a negotiated plan in the patient's best interest.

The standard of care at the end of life is a negotiated treatment plan. Physicians have a responsibility to explain to patients and families what medicine can and cannot realistically achieve. Beyond this, they have a duty to present a realistic view of the expected burdens, benefits and residual quality of life, and to help patients and families explore whether these are acceptable within the framework of their goals and preferences. In summary, communication is key in determining the appropriate use of life-sustaining treatment.

References

  1. Nancy B. v. Hotel-Dieu de Quebec (1992), 86 D.L.R. (4th) 385 (Que. S.C.).
  2. Buckman R. How to break bad news: a guide for health care professions. Baltimore: Johns Hopkins University Press; 1992.
  3. The SUPPORT Investigators. A controlled trial to improve care for seriously ill hospitalized patients. JAMA: Journal of the American Medical Association 1995; 274: 1591�8.
  4. Tomlinson T, Brody H. Futility and the ethics of resuscitation. JAMA: Journal of the American Medical Association 1990; 264: 1276�80.
  5. Helft PR, Siegler M, Lantos J. The rise and fall of the futility movement. New England Journal of Medicine 2000; 343: 293�5.

Resources

  • Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, et al. SPIKES � A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist 2000; 5: 302�11.
  • Singer PA, MacDonald N. Bioethics for clinicians: 15. Quality end-of-life care. CMAJ: Canadian Medical Association Journal 1998; 159(2): 159�62.
  • Weijer C, Singer PA, Dickens BM, Workman S. Bioethics for clinicians: 16. Dealing with demands for inappropriate treatment. CMAJ: Canadian Medical Association Journal 1998; 159(7): 817�21.