When patients don’t want to be saved

— Navigating the right to die

By Jules Murtha

  • Patients have a right to shape their end-of-life care with advance directives and other palliative care options.
  • Clinicians can better serve patients of different faiths by approaching care with cultural competency.
  • When ethical dilemmas regarding palliative care arise, clinicians can return to the basic ethical principles: autonomy, beneficence, nonmaleficence, fidelity, and justice.

The relationship between morality and death is a historically significant one. Modern death in America often entails care provided by strangers in an institution flooded with machinery, far from the comfort of one’s family and home. Many physicians and scholars deem this a poor way to die.

Now, some patients nearing the end of their lives have an alternative to prolonged suffering in a hospital: Medical-assisted death. The moral logic supporting a patient’s right to terminate their life by means of lethal medication, either through self-ingestion or with a doctor’s help, is based on harm reduction. Legal, ethical, and professional controversies related to this practice are still surfacing.

The process of terminating care

Death is inevitable. The degree to which one suffers, however, can be modified by choosing appropriate end-of-life care. According to a 2021 article published by SAGE Open Medicine, mitigating suffering, optimizing quality of life, and providing comfort in death are the goals of palliative care.

What is an advance directive?

When a patient is no longer capable of communicating their desire to terminate treatments, advance directives are useful. An advance directive is a legal document specifying the kind of care a patient wants to receive, should they lose the ability to communicate due to a serious injury or neurodegenerative disease. Patients who complete them must be at least 18 years old.

Advance directives may include the following:

  • Living will: A legal document that describes medical or life-sustaining treatments patients may want if they become permanently unconscious or terminally ill. Writing a living will gives patients the power to make decisions for themselves when unforeseen circumstances arise.
  • Do not resuscitate order (DNR): The formal request that hospital staff do not perform CPR on an individual if their heart or breathing stops. DNRs do not have to be a part of a living will. They are accepted in all states.
  • Durable power of attorney for healthcare (DPA): Legal in most states, a DPA specifies whom is held responsible for a patient’s healthcare decisions if the patient is unable to make them on their own.
  • Physician orders for life-sustaining treatment (POLST): Designed for patients with serious illnesses, physicians complete POLSTs to ensure patients receive their desired care.

Advance directives may be especially helpful for patients who endure immense suffering. A patient with terminal cancer, for example, may document their request that hospital staff forgo  a respirator if they stop breathing. This gives the patient power over their own healthcare—which includes the right to die—and mitigates suffering by offering peace of mind.

Cultural competency and self-determination

Another factor for clinicians to consider when providing end-of-life care is each patient’s cultural and religious beliefs. When clinicians establish cultural competence—the ability to implement care with a patient’s cultural, religious, and social needs in mind—the quality of care improves.

The importance of cultural competence in healthcare extends to patients’ mental health and daily life. According to a 2021 article published by StatPearls, health-related anxiety diminishes in patients when they can turn to their faith.

Religion and spirituality inform some patients’ healthcare decisions regarding diet, medicine, modesty, and gender of their health providers. They can also inform practices surrounding death. For example, several religions strictly prohibit euthanasia, including Mormonism, Hinduism, Islam, Jehovah’s Witnesses, and others.

The influence of religion

On the other hand, physicians may legally refuse to provide certain types of standardized care that aren’t conducive to their own religious beliefs. This is often the case for Catholic doctors who refuse to perform abortions or sterilizations, as written in an article published by the American Medical Association Journal of Medical Ethics.

Doctors who choose not to provide emergency treatments based on conscience laws may be subject to tort liability, giving patients who are harmed by medical inaction the opportunity to sue for medical malpractice.

To avoid this situation altogether, physicians can abide by transparency requirements and protect patients from medical refusals by informing them about the practice. Patients may then seek appropriate care elsewhere, if possible.

Increased cultural competency and better palliative care options for patients of specific faiths is dependent on education. Patient care improves when physicians acquire cultural competence through proper training. Healthcare institutions fare better overall when their staff, including non-clinicians, are prepared to notify patients about medical refusals and a patient’s right to self-determination.

How medical ethics can aid physicians in palliative care

When doctors face ethical dilemmas regarding palliative care or a patient’s right to die, they can look to the universal ethical principles for guidance. According to SAGE Open Medicine, these principles include autonomy, beneficence, nonmaleficence, fidelity, and justice.

Medical ethics hinge on a healthcare professional’s ability to respect the autonomy of their patients. Autonomy, which is a patient’s right to self-determination, can be protected by advance directives before a patient loses the ability to create one. Patients have the right to terminate or refuse treatment altogether, which physicians should support out of respect for patients’ autonomy.

Reducing harm

When a patient no longer has the ability to create an advance directive, doctors must pursue treatment plans most beneficial to the patient. Physicians in this position can practice nonmaleficence by choosing care plans that cause the least possible amount of harm.

Justice and fidelity are served by doctors who are honest with their patients about prognoses and care options, including a patient’s right to terminate treatments. Truth-telling, as well as fair distribution and knowledge of health resources, is necessary in order to effectively respect patients’ self-determination.

While “dying badly” is still the norm in most of the US, there are 10 jurisdictions in which patients can pursue medical-assisted deaths. According to the Yale Journal of Biology and Medicine, Oregon, Montana, New Jersey, and Colorado are just a few.

What this means for you

Where legal, physicians can inform patients of their right to self-determination, granting them peace of mind and control in their final days. Regardless of your own spiritual or religious beliefs, acquiring cultural competence will improve the care physicians provide to patients. Finally, when end-of-life care presents physicians with ethical challenges, they can take a cue from the five ethical principles guiding healthcare professionals: autonomy, beneficence, nonmaleficence, fidelity, and justice.

Sources

  1. Akdeniz M, Yardımcı B, Kavukcu E. Ethical considerations at the end-of-life care. SAGE Open Medicine. 2021;9:205031212110009.
  2. Campbell CS. Mortal responsibilities: bioethics and medical-assisted dying. Yale J Biol Med. 2019;92(4):733-739.
  3. Familydoctor.org editorial. Advance Directives and Do Not Resuscitate Orders. Familydoctor.org. 2021.
  4. Kogan R, Kraschel KL, Haupt CE. Which legal approaches help limit harms to patients from clinicians’ conscience-based refusals? AMA Journal of Ethics. 2020;22(3):209-216.
  5. Swihart DL, Yarrarapu SNS, Martin RL. Cultural religious competence in clinical practice. In: StatPearls. StatPearls Publishing; 2022.

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