Introduction:
According to the National Institute of Health in the United States, end-of-life care is when “(1) the presence of a chronic disease(s) or symptoms or functional impairments that persist but may also fluctuate; and (2) the symptoms or impairments resulting from the underlying irreversible disease require formal or informal care and can lead to death.” (Izumi, 2013) There are several options and/or treatment steps in end-of-life care. Most importantly first, a patient goes through rational suicide. Rational suicide is when “When a person has decided—after going through a decision-making process and without coercion from others—to end his or her life because of extreme suffering involved with a terminal illness.” (States, 2018) Then, a health professional will administer an aid-in-dying where a death-causing agent is introduced, or hastening death by removing or simply not giving life support treatment. In end-of-life care, doctors and nurses find themselves often in situations where they must make ethical decisions for patients. I am interested in the ethical decision making process of health professionals, compromises to such ethical decision making, and how organ donation can further affect the decision of health professionals for their patients. This topic is of interest to me because it brings to light the difficulty of having to go against your own belief system in order to satisfy a patient’s wishes, and how our values, even if unconsciously, can affect what the ethically correct decision is in end-of-life care.
Ethics in Decision Making:
Doctors and nurses, dealing with end-of-life care, find themselves often having to make decisions for or on behalf of their patients every day. Due to medical advancement, health professionals now have the tools to prolong someone’s life and avert death for a while longer. Decision making in end-of-life patients either ends in extending life or declining life-sustaining treatments. “Owing to modern medicine, life-support technology helps to prolong the end of life of critically ill patients in the biological sense, but still death cannot be avoided ultimately.” (Li, 2013) However, there are ethical dilemmas and principles to consider in the process of decision making. “To be ethical, the goals of care for any individual patient and the family must be determined based on the potential to provide more good than the potential for doing harm.” (Hayes, 2004)
An ethical principle to consider is autonomy. Autonomy emphasizes that the patient has the right to decide their own goals of care. After being faced with a treatment or treatments, the patient has the final right to choose a treatment plan or no plan at all. “This includes the right to refuse treatment, including life-sustaining treatment.” (Hayes, 2004) However, there are situations in which patients are unable to clearly communicate their wishes nor have the capacity to. In such cases, medical professionals must still decide based on their patient and not personal beliefs. “Narrative ethics is a method of determining what patients would have wanted in a situation by interviewing the patients (if possible) as well as the families and those close to the patients to ascertain these values. In this way, decisions can be made that are consistent with the way patients have lived their life and, it is hoped, represent what they would have chosen in an EOL situation.” (Shreves, 2014) Therefore, autonomy is maintained as best as it could be in such ethical dilemmas.
The second ethical principle to consider is justice. Justice is giving everyone equal treatment and standard of care regardless of all other factors. In end-of-life care, justice is making sure that patients wishes are fulfilled regardless of other patients or outside factors. “In the United States, the concept of rationing creates great public discord; it is currently unacceptable to discontinue life support for one patient in order to initiate it on another.” (Shreves, 2014) Maintaining justice can be an ethical dilemma for health professionals because they must not intervene on a patient’s treatment even if it means a more critical patient needs it more than they do. “There is no consensus about what constitutes a just and fair method of balancing the preferences and requirements of individual patients against the diverse needs of society” (Bossaert, 2015)
Another ethical principle specifically involved in end-of-life care is futility. “The World Medical Association (WMA) defines futile medical treatment as a treatment that offers no reasonable hope of recovery or improvement” or from which “the patient is permanently unable to experience any benefit” (Bossaert 2015) This occurs often when medical professionals and the patient, or patient’s family, do not come to an agreement on a path of treatment. In the US, there is usually a process or steps to go through when such situations arise. Patients and/or their families are first given time to explore other options and secondary opinions. Additionally, a recommendation made by the hospital’s ethics committee can also be asked for. “Consults provided by ethics teams can address a variety of issues that arise when values or expectations of treatment options differ between patients/families and health care providers.” (Shreves, 2014)
Compromises in Ethical Decision Making:
As expected in difficult medical situations like end-of-life care, there are certain dilemmas that arise when making an ethical decision. “Working with clients in the context of end-of-life issues and grief can be challenging for social workers and other helping professionals who may face personal discomfort and lack of training and experience in these areas. As a result, ethical dilemmas may not be given sufficient consideration, and hasty decisions may be made. “(Wallace, 2017) Doctors and nurses are in all their right to hold a belief system and sustain values important to them. However, they must also be able to put such beliefs aside and act accordingly to medical laws or a patient’s belief system, even if they are vastly different. Shigeko Izumi offers an example of such a situation from a nursing perspective in Japan where only those suffering from terminal cancer or HIV/AIDS can receive palliative care. “A patient who is suffering from advanced-stage chronic obstructive pulmonary disease (COPD) cannot be admitted to the hospice palliative care unit because of his diagnosis. Nurses taking care of him may recognize his needs for end-of-life care such as good symptom management and assistance to prepare him for death. But nurses may not be able to bring in resources to meet his needs because he does not meet the hospice palliative care criteria. Nurses in this situation would feel moral distress for providing unjust and inequitable care differentiating patients by their diagnosis.” (Izumi, 2013) This is a perfect example of how nurses find themselves ethically compromised in a situation and choose between what is medically right or ethically right. Unfortunately, both choices don’t always align. “Healthcare clinicians experience ethical dilemmas when one or more of their personal beliefs, professional beliefs, and/or societal mandates are in conflict. For example, a dilemma may exist when a particular patient situation seems unique enough, to a clinician, to defy a held individual or collective belief. This occurs because individual patient situations are grounded in the particulars of the patient’s case and care. However, we all hold cultural and societal values that are brought to bear before we are faced with any particular patient situation” (Hayes, 2004) For successful and nonbiased decisions in end-of-life care doesn’t mean to ignore your own personal belief system. Instead, to make ethically right decisions, doctors must be cognizant of how their values and beliefs can influence their decision making. Health professionals must reflect on their own self awareness and judge if they are able to make a nonbiased decision. “Self-reflection is critical to understanding and applying ethics” (Wallace, 2017)
Another compromise commonly seen in end-of-life care are economic conflicts. Mostly unspoken about, end-of-life care has economic implications on society. As ironic as it sounds, it costs money, specifically tax-payer money, to die. For example, in 2004, a British doctor called Dr. Shipman took the lives of over 200 patients illegally and committed suicide after. “Harold Shipman’s suicide will save taxpayers more than £600,000 in prison and court costs. Had he lived until he was 70 – and, chillingly, he could have lived longer – he would have spent another 12 years behind bars, at vast cost to the public purse.” (Epstein, 2007) For the patient, economic pressure can influence their decision to accept or refute life-sustaining or life-ending treatment. However, even if influenced by economic factors, it doesn’t make their decision any less valid or illegitimate. “While the validity of the decision depends on the provisions of valid consent, notably competence and voluntariness, these provisions have been construed in a way capable of legitimizing any motivation – including an economical one” (Epstein, 2007) As long as a patient meets the requirements to give informed consent for or against a treatment, their reason behind their decision should not affect whether their wishes are met.
On the other hand, what is unethical is when economic factors compromise a health professional in making decisions for a patient. A big economic pressure on health professionals are government health insurances. In America, life expectancy plays a key role in end-of-life care when applying for such health care programs like hospice care. It costs the government and tax payers money in order to maintain people alive through end-of-life care so health insurance usually will not grant such care if life expectancy is extensive. “People in the United States’ hospice programs are not dying fast enough to satisfy federal government auditors. Washington is concluding special reviews of hospice records and calling for repayment of money spent under Medicare for patients who lived beyond the expected six months after they had enrolled for hospice care.” (Epstein, 2007) These institutionalized economic pressures by the government can influence doctors in making a hasty unethical decision for patients. For example, health professionals can choose to push a patient towards life-ending treatment, or simply choosing it themselves if a patient is unable to consent, because it would cost more to keep them alive. Such a decision, based off economic pressure, is a violation of ethical decision making.
Organ Donation:
A big factor that arises from end-of-life care are organ donations after a patient has passed. “Modern medicine has improved to ever higher levels in its capacity to preserve life through the enhancement of its intensive care structures and the possibility of organ transplantation. But, at the same time, these practices have brought the risk of forgetting and/or obfuscating the basic principles of medical ethics, which, first of all, prescribe that clinicians must not kill their patients and that vital organs can be removed only from dead human beings.” (Taraschi, 2017) Up until the point of death, organ donation should never play a part in a doctor’s decision making. If the patient is an organ donor but wishes to be resuscitated, health professionals must abide by those wishes always regardless of any external factors. It is no secret that doctors have several patients all at once, some more familiar to them than others. It is unethical for a health professional to advise their organ donor patients towards a treatment because it would benefit another patient more. This is a direct violation of the ethical principle of justice as mentioned earlier. Each patient is entitled to fair and equal treatment no matter the outside factors in society. “The primary goal of resuscitation is to save the patient’s life.” (Bosseart, 2015) Only after death, it is ethical to then focus on organ donation and preserving organs if the deceased patient was an organ donor. “However, the duty of resuscitation teams for the living patient should not be confused with the duty of physicians for the dead donors, where the organs are preserved to save other people’s lives. “(Bosseart, 2015)
Conclusion:
Health professionals often must overcome their own feelings to satisfy a patient’s wishes, especially when ending their own life. Doctors are trained with the priority of saving/sustaining lives but also meant to alleviate the suffering of their patients. Unfortunately, both goals of care may not always align in all scenarios. Health professionals must respect the ethical principles of a patient and always act in a patient’s best interest while also upholding the patient’s wishes to the best of their abilities. Additionally, it is the responsibility of health professionals to be self-aware of their biases and consult if they are still fit to provide the best care for their patient. To conclude, end-of-life care is a process where there is a vast amount of ethics implicated both by the patient and doctor.