Ethics at the End of Life
The World Health Organization provides the following definition for ethics:
Ethics is concerned with moral principles, values and standards of conduct. The field of health and health care raises numerous ethical concerns, related to, for example, health care delivery, professional integrity, data handling, use of human subjects in research, and the application of new techniques, such as gene manipulation.
The patient, his or her family, and the healthcare team are often faced with challenging scenarios in which there are no apparent “right” answers. In the effort to survive longer, patients, families and clinical staff are often confronted with difficult choices regarding medical advances that may inadvertently prolong suffering and the dying process rather than bring healing and recovery.
Patients, families and clinicians may face a myriad of ethical dilemmas when providing end-of-life care: Complex medical scenarios when deciding to withdraw life support interventions; when to use artificial hydration and nutrition at the end of life; to issues related truth telling and disclosure.
In contemporary medical bioethics, four major principles are often called upon to assist patients, families, and their physicians in making meaningful and morally acceptable choices with respect to care at the end of life: the Hippocratic principles of non-maleficence and beneficence, as well as the more recently developed principles of autonomy and justice. This guide serves as a brief overview of some commonly encountered moral themes in Palliative Care; given the unique complexity of each patient’s illness and experience of dying, it represents a small spectrum of scenarios that might arise.
Quality versus Quantity of Life
When confronted by a life-limiting diagnosis, most patients reflexively utter the words, “But I want to live”. This is a natural reaction when confronted with one’s mortality. While life prolongation may be part of a patient’s initial goals of care, there comes a tipping point where it becomes imperative to consider the state of one’s quality of life. This refers to one’s well-being which includes all the aspects of life that make life meaningful to that person. Only the patient can decide what is an acceptable quality of life for him or herself.
There is always a balancing act when a patient pursues active medical treatments that will sustain life while ensuring that his or her comfort is not compromised. It is important that the patient decides how long he or she would like to pursue life prolonging treatments, in the context of his or her physical, psychosocial, and spiritual suffering. Often times, families want their loved ones to “keep hanging on” and believe it is necessary to pursue every possible intervention that has a slight chance of extending their lives. However, in Palliative Care, the emphasis is truly on maximizing symptom control to reduce suffering, in the hope of enhancing one’s quality of life. Upholding the aspects of life that a patient truly values in the context of their medical disease should supersede the pursuit of any intervention that has potential to be detrimental to their well-being.
A seemingly straight forward question, however, it can be a source of concern when it comes to making treatment decisions. In Canadian law, the capable patient always decides. However, when we add in unique cultural traditions, the treatment of minors and adults accessed to not have capacity- challenges can arise. In Canada a patients capable of making his or her own treatment decisions when they are able 1) to understand the relevant proposed treatment and 2) can appreciate the reasonably foreseeable consequences of giving or refusing consent to the treatment. If a patient becomes incapable of making decisions for his or her own treatment, a substitute decision maker (SDM) is the person who has the legal right to decide about treatment options for that patient. If a patient has created a proxy or Power of Attorney (POA) for Personal Care document, while he or she is still capable, then the named proxy or attorney for personal care becomes responsible for making treatment decisions on behalf of the incapable patient. In the absence of a POA for Personal Care document, each province has a prescribed hierarchy for selecting a legal substitute decision-maker (SDM). The following represent the hierarchy outlined in the Ontario Consent to Treatment Act (1996):
1) A court appointed guardian with the authority to give or refuse consent to treatment.
2) The POA.
3) A representative appointed by the Consent and Capacity Board (CCB) with the authority to give or refuse consent to treatment.
4) A spouse or partner.
5) An adult child (16 years old or older) or parent or a Children’s Aid Society representative.
6) A parent who has only a right of access.
7) An adult sibling.
8) Any other relative (biological, marital, or related by adoption).
9) The Public Guardian and Trustee (a government appointed representative who is a last resort if no other person is capable, available, or willing to give or refuse consent).
Note: If you reside in a different province- refer to your provincial statutes under “consent to treatment” to see how the hierarchy might be outlined.
How should surrogates (Proxy, Attorney for Personal Case, Substituted Decision-Makers) make decisions?
The process of decision-making often becomes complicated when patients become incapable of making decisions for themselves, whether due to the inability to speak, cognitive impairment, or delirium. Surrogate decision making involves recalling a patient’s previously expressed wishes applicable to the circumstance at hand. for what would be acceptable to sustain their quality of life is helpful for the surrogate decision maker.
However, tension can typically arise when the healthcare team questions whether the surrogate has an accurate understanding of the patient’s wishes and values. This type of scenario may have multiple other complicating factors if any of the following arise:
-the surrogate does not know the patient’s previously expressed preferences;
-the surrogate has questionable decision making capacity;
-the surrogate’s decision is in conflict with other loved ones in the patient’s life.
In the process of decision-making, it is important for patients and families to understand their legal “role” as an SDM. How families make decisions may not accord with the expected roles of an SDM and these need to be explored early and consensus obtained on who receives health information in the family and how decisions will be made.
Withdrawing versus withholding treatment
In some situations, it is ethically appropriate to withhold treatment if potential risks outweigh benefits of an intervention or if it is not in keeping with the patient’s goals of care. This highlights the ethical principles in Medicine of promoting the patient’s best interests (beneficience), and doing no harm (non-maleficience). If that treatment is burdensome or futile, then withholding it is consistent with principles of autonomy and justice. When treatments are withdrawn, the patient will typically die from the natural progression of disease; interventions therefore would merely prolong the dying process which is an inevitable course for the patient. Sometimes, it may be reasonable to consider a trial of interventions for a limited period of time, such as antibiotics to improve discomfort from an infection. If there is no symptom improvement after a short specified amount of time, then it would be acceptable to discontinue that treatment.
Ultimately, treatments such as antibiotics, artificial hydration (IV fluids, hypodermoclysis), artificial nutrition (TPN, NG feeds), blood transfusions, CPR and life support may exist but may not be relevant in every clinical scenario depending on what the patient’s goals of care are. Each intervention needs to be evaluated in the context of a patient’s illness, disease progression, and prognosis and only started if it is aligned with what the patient wants (i.e. life prolongation versus quality of life) at that current state in their illness.
Medical “futility” is frequently considered a value-laden and highly contentious term, however, it can be defined as a clinical action not serving a useful purpose to attain a specific goal for a certain patient. Interventions that are futile typically are unlikely to benefit a patient in a particular medical situation, but they may or may not aligned with a patient’s intended goals or wishes. It can often be difficult to fully grasp what “benefit” means to a patient, as healthcare providers, patients, and even their families may have distinct perspectives on what it means for an intervention to be beneficial3. This again highlights the importance of understanding a patient’s core values and preferences, and essentially their goals of care. When there are concerns around the potential “futility” of an intervention, it may be helpful to consult the Ethics Team to assist in devising a treatment plan.
Requests from the family to withhold information
In Medicine, “truth telling” refers to the practice of healthcare practitioners providing information to patients about their medical condition and prognosis to enable them to make informed choices about healthcare and other aspects of their lives. A healthcare practitioner’s primary responsibility is to his or her patient; if a person expresses interest in being informed either completely or partially about their illness and treatment, he or she has the right to be informed without needing consent from the family. Often times, family members may insist that updates on medical status should be withheld from the patient due to fear that the patient may lose hope or feel distressed about bad news. This can often be related to cultural influences, family dynamics, and even age or psycho-spiritual aspects of individual patients’ lives. However, studies show that most patients generally want to be told the truth and typically many of them already know about the condition and implications of their terminal illness even before being told. The majority of patients wish to participate in decision-making about their care, and want their healthcare team to be honest with them; this provides them an opportunity to ask specific questions about what to expect in the progression of their illness3.
There may be instances in which patients do not want to be completely informed about their disease. Perhaps there will be a specific time in their illness when they no longer want to be informed, and defer the medical updates to their family members. It is important for healthcare practitioners to balance cultural sensitivity with patient-centered medicine when exploring a patient’s desire to know about their illness. For example, if families request that the healthcare team withhold information, it is important to explore that request of non-disclosure further. The healthcare team should approach a concerned family with compassion and cultural sensitivity6. Ultimately, it is important to respect patients’ decisions to discuss as much or as little as they want to know about their illness. It often helps if patients express this wish in front of their families.
Palliative sedation refers to the use of pharmacological agents to reduce consciousness with the intention of providing relief for intractable symptoms when all other possible therapeutic options have failed. This intervention is only considered in a patient who has been diagnosed with an advanced progressive illness and typically the patient is perceived to be close to death (i.e. in the last two weeks of life). Generally, the goal is the lowest level of sedation required to achieve the desired comfort level/control of symptoms; therefore, specific pharmacological agents are generally started at the smallest possible dose and titrated upwards to effect. This therapy is distinct from medical assistance in dying, as the intention is not to hasten death or shorten one’s life. Common indications include intractable cases of agitated delirium or dyspnea, massive hemorrhaging, and refractory seizures—all of which are extremely distressing to a patient3. The role of palliative sedation in psychological, spiritual, or existential distress is unclear. Commonly, the experience of having a patient sedated can be a conflicting and emotional time for families and caregivers; it is therefore crucial to ensure they receive appropriate psychosocial and spiritual support.
Responding to requests for assisted dying
When patients are confronted by their life-limiting illness and experience loss of function in their day-to-day lives due to their disease, it can be very distressing. In their suffering, some patients become compelled to wish for a hastened death. Some of those patients may endorse some passive suicidal thoughts, whereas others are insistent about wanting to end their lives in a specific moment with medical assistance. With recent developments in the movement for medical assistance in dying (MAID) in Canada, it is important for healthcare practitioners to recognize these requests and respond appropriately. Regardless of whether an individual healthcare practitioner supports or stands against this controversial topic, it is important that patients are still heard. Perhaps patients fear a protracted disease course with intractable symptoms, or they are distressed by the disability that their illness brings—regardless of what is driving their request, it is crucial for healthcare practitioners to recognize that there is some unaddressed suffering at the root of this request that needs further exploration.
An accreditation requirement for all health care providers in Canada stipulates that all patients, families, staff and physicians should have access to ethics support at any point in the provisions of care. If you have any ethics-related concerns, speak to your institution about the on-site or affiliated Ethics Team or Committee.
How do I know if my concern is an ethical dilemma? Check out the information on the attached pocket-tool to help you understand if your issue has an ethical component.
Ethics in Practice [Respecting choices in EoL Care: Challenges and Opportunities]
Ethics in Practice: At end of life-Part 1
Ethics in Practice: At end of life-Part 2
Canadian Medical Association End-of-Life Policies and Reports
EoL Care: An ethical overview (Centre for Bioethics University of Minnesota 2005)
 Scheunemann LP et al. Am J Respir Crit Care Med 2012; 186(6):480.
 The Pallium Project, Pallium Palliative Pocketbook 2008:2-11.
 Kasman, DL. J Gen Intern Med 2004;19(10):1053.
 Hébert, PC et al. CMAJ 1997;156:225.
 Jotkowitz A et al. Cancer Invest 2006;24(8):786.
 Dean MM. J Palliat Med 2012;15(8):870.