Both ethics and medical law emphasize patient consent as a basic right and must be respected in end-of-life situations. Literature on health care ethics has a lot to say on consent to treatment and it is in this context that the discussion of end of life choices will have significant focus. Most of this discussion concerns ethics and morality, on what is right and moral and should be observed by society. Laws should be made based on ethics and morality although this is not sometimes the norm in some societies.
There are varying opinions on end-of-life issues but the vast literature on this subject cites customs and religious beliefs as influential factors in shaping statutes and laws on end-of-life. Culture and spirituality influence our values and behaviours and influence experience and illness patterns. Culture shapes our sense of security and belongingness and provides a backdrop on how to deal with life and how to accept death (End of Life Nursing Education Consortium as cited in Matzo & Sherman, 2010, p. 3).
When should life end?
When should life end or who should decide to pull the plug? The Catholic Church has always been firm in saying that physician-aided suicide and euthanasia are against God’s law. But again there are many contrasting opinions on this subject. Policy makers sometimes look at it in different perspectives, i.e. without the religion side of it. What is important is culture, they emphasized.
The situation in the twenty-first century is changing. Delivery of healthcare is changing too, more so with dying. Before, it was customary for people to die at home with their grieving families. Now, Americans die in institutions, with machines on their bodies and their families not on their side. The United States is now a ‘death-denying society’ and physicians and nurses are not well educated with providing care to dying patients or end-of-life situations. (Cramer, 2009, p. 54)
Physicians and nurses should be the first to know the concept and administration of care because they are there in the most unwanted situation –the death bed. What must they know? First, from an ethical perspective, there is the principle of beneficence which states that pain and other symptoms have to be treated or controlled – if the sickness cannot be healed, at least the pain has to be controlled. The legal issue of control of pain is not so clear and the guidelines on euthanasia and easing the suffering of a dying person also differ across cultures. (Singer & MacDonald, 1998, p. 159)
The legal and philosophical questions
The ethical discussion on patient’s consent concerns legal and philosophical questions and legal means the U.S. legal question (and answer) on consent. A common philosophical base is the Kantian doctrine which says that humans have a free choice – ‘self determining and self-governing’ – so their consent to whatever concerns their physical body and everything about themselves must be sought. In doing this, a patient must be given the freedom to choose. (Randall & Downie, 2010, p. 3)
An important point on the question of consent is patient choice. Patient choice is also an important topic outside health, i.e. the politicians and groups concerned of patients’ welfare which reflects the consumerism issue of the subject matter. The concept of patient’s choice expands to the subject of policies and opinions of end-of-life care, such as where care and death will occur. Patient choice is the central idea on the discussion of end-of-life care but this subject has a lot of issues and ambiguity, which makes it challenging to be a focus of discussion.
The four conditions
Four conditions found in ordinary speech take place in the patient’s choice. The basic concept must come from ordinary speech because this is where the concept seems to be unopposed. First is it must be free, which means it is not forced and there are no constrains, and the patient is given the chance to do what he or she wants to do. There are many concepts about being free and philosophers have so many notions about it. Our point here is that our choice is free if it leads to a satisfaction of our want although we might not be able to choose our want. (Randall & Downie, 2010, p. 4)
The second condition is that there should be alternatives. Alternatives are given when we have to choose which one is the best. One example is the situation in an election where we are given the choice of whom to vote – there has to be more than one candidate.
The next condition is about information or about alternatives. The patient needs information about the choice that he/she is going to make, or the alternatives to that important choice. This situation is about life, or the remaining part of his/her life, therefore the alternatives have to be known by the owner of that life. An example is that if we have to choose between a car and a computer, we must have the necessary information about these products.
The last condition is about responsibility, i.e. if we make our choice, then we have to take responsibility for our action. A patient should be given the free choice and once he/she makes the choice, he/she has to take responsibility for that action.
The four conditions stated above are present in everyday language. When they are presented in the most unwanted situation – end of life – they present a condition for respect and morality which makes us human. A human being is given a free choice. In the context of the spiritual and the religious, human beings are special and different from ordinary animals because of that free choice.
Medical treatments should also be given along with patients’ choice. A physical body is the main component of our being persons or humans; therefore, we have the right to choose and give or deny consent without being forced (freedom), with the necessary alternatives and information about patients’ conditions, and the treatments that will be given. (Randall & Downie, 2010, p. 5)
Legal literature supports the dying patient’s right to choose. If a dying patient’s wishes are not given, the patient might feel like a captive to the machine attached to his/her body (Field & Cassel, 1997, p. 188). In Canadian legal literature, this is known as the doctrine of informed consent and respect for autonomy (Singer, Dickens, & Workman as cited in Singer & MacDonald, 1998, p. 160).
End-of-life care
In providing end-of-life care in practice, there are three elements to be considered: control of pain along with the symptoms that follow, the question of allowing life-sustaining treatment, and aid of dying patients. (Singer & MacDonald, 1998, p. 160)
Euthanasia and physician-assisted suicide can be considered within the subject of end-of-life care. Physician-assisted suicide means a doctor provides ways and information to allow a terminally-ill patient to end his/her life. A doctor may provide a prescription for an overdose of barbiturates (Foley as cited in Kerridge, Lowe, & McPhee, 2007, p. 368). The moral issues are common to physician-assisted suicide and euthanasia.
Physician-assisted suicide was declared unconstitutional by the Supreme Court but the decision gave individual States the freedom to choose (Vacco v Quill and Washington v Glucksberg as cited in Kerridge et al., 2007, p. 368), i.e. allowing or not allowing physician-assisted suicide or euthanasia.
The cons reasoned out that physician-aided suicide or euthanasia is immoral because it is intentionally causing a person to die, or, if a patient is allowed to self-administer his/her own death it doesn’t mean full voluntariness or consent, and the patient might be ill-informed. Moreover, the pros and the cons agree that physician-aided suicide is only applicable to the physically able. Also, there are unsuccessful suicide attempts which aggravate the patient’s situation, making it more cruel and inhuman. (Kerridge et al., 2007)
A case was brought before a federal district court in the U.S., handled by District Judge Barbara Rothstein who ruled that physician-assisted suicide is a right protected under the Fourteenth Amendment. Although this was rebuked by another judge, an en banc panel of the Ninth Circuit reinstated Judge Rothstein’s decision saying that ‘how and when to die’ is a basic life decision which is constitutionally protected (Gorsuch, 2006, p. 10).
Giving special health care to the depressed and dying is end-of-life care – and that makes it special. Life-sustaining treatments are challenges to health care since they involve advance care planning and decisions whether or not to continue with attaching machines to a patient’s body. In Canada, advance care planning is an aspect of the principle of respect for autonomy. Canada does not support euthanasia or physician-assisted suicide. (Singer & MacDonald, 1998, p. 160)
In the United States, the National Association of Social Workers (as cited in Corey, Schneider-Corey, & Callanan, 2011, p. 102) published a policy statement pertaining to end-of-life situations and patient self-determination. The document states that end-of-life decisions are choices that terminally-ill patients make whether to accept care and treatment options. The conditions are about fast and immediate treatment so the patient can be relieved of the condition, availability of life-sustaining treatment and machine, treatment to alleviate the pain even if the drug is for controlling the pain and not for cure, withholding or stopping the life-sustaining machine, euthanasia, and doctor-aided suicide.
The NASW report also defined a terminal condition as one in which there is no reasonable chance of healing and wherein the application of a life-sustaining machine would just prolong the agony or postpone death of the patient. (Corey et al., 2011, p. 102)
Most physicians do not know what dying persons had wished for before they are unable to communicate. It is then the job of the nearest family member to tell what the physician should do. But again, the family member may not have that information of the patient’s desire or directive before he went into a coma. There are situations when a family member – a sister or a brother – is alarmed to say that they have never done it before. The physician or the clinic is in a dilemma on what decision to take. There are however people and organizations that care and look after dying people and are willing to provide the needed information and expertise in caring for dying persons.
Spirituality and culture
Spirituality and culture are important components to administering palliative care. Palliative care involves active and meaningfully-loving therapies to support and ease individuals’ and families’ suffering in providing care to terminally-ill loved ones. End-of-life care (EoLC) is an important part and objective of palliative care which aims to ease suffering of patients facing death. Health professionals and caregivers providing palliative care aim to optimize the quality of living for patients and their families (Allen & Watts, 2012, p. 348). Health promotion involves emphasizing healthy lifestyles and behavioural changes (Richardson; Casey as cited in Allen & Watts, 2012).
Pediatric palliative care is another significant subject in quality of life which aims to ease suffering and provide comfort for children facing death and their families. It should be emphasized on the families of terminally-ill children to focus on quality of life rather than the number of days lived. Managing distressing symptoms in a child’s illness and easing the pain can improve quality of life and the child’s illness (WHO as cited in Crozier & Hancock, 2012, p. 199)
Caregivers and health professionals need help too, in providing quality health care for dying persons. One study found that caregivers in nursing homes were not ready to discuss end-of-life situations with family members of patients (Wilson as cited in Schirm & Sheehan, 2005, p. 92). The personnel wanted more education and information on effective and proper communication with dying persons and on pain relief and quality palliative care.
Cynthia Cramer, a 2009 Trish Greene Memorial Quality-of-Life Lectureship, cites organizations and people who really care. Hospices around the world would do everything to provide the necessary love and care. Hospices are cheerleaders if there’s hope for a cure of a certain cancer. But for advanced cancer, everyone would pray for control of pain, if that should be the only hope. Providing comfort to dying patients is a job of physicians and nurses, but many do not know how to deal with end-of-life situations. When a patient dies, physicians and nurses feel they failed in their job. It is time that physicians and nurses should get educated with end-of-life care. Cramer (2009) says that people in hospitals administering care are ‘practicing medicine’ because they are still in the process of learning.
An important organization actively concerned in end-of-life care issues is the American Psychological Association, which has been promoting discussion groups to focus on end-of-life issues, develop information materials for the general public, and provide reports and resolutions for end-of-life issues. It has many continuing programs and conventions about end-of-life issues and concerns. (Werth & Crow as cited in Corey et al., 2011)
Organizations like the APA must multiply and propagate end-of-life concerns since this is one of the effective learning processes for physicians, nurses and family members administering end-of-life care. Educating health professionals can help in providing quality end-of-life care (Schirm & Sheehan, 2005, p. 91).
Information campaigns should also be given to the general public because this is a reality in clinics and hospitals, the lack of vital information that should be first-hand knowledge for our dying patients. Dying patients have one last chance of acquiring the necessary health care and it is in this context that some of our doctors and nurses – and hospitals – are fighting for their patients while others are not, and are more concerned with profit.
References
Allen, M. & Watts, T. (2012). Promoting health and wellbeing at the end of life: The contribution of care pathways. International Journal of Palliative Nursing 2012, vol. 18, no. 7, pp. 348-354. Web.
Corey, G., Schneider-Corey, M., & Callanan, P. (2011). Issues and ethics in the helping professions. Belmont, California: Cengage Learning.
Cramer, C. (2009). To live until you die: Quality of life at the end of life. Clinical Journal of Oncology Nursing, Vol. 14, No. 1. Web.
Crozier, F. & Hancock, L. (2012). Pediatric palliative care: Beyond the end of life. Pediatric Nursing, vol. 38, no. 4, pp. 198-227. Web.
Field, M. & Cassel, C. (1997). Approaching death: Improving care at the end of life. Washington D.C.: National Academy Press.
Gorsuch, N. (2006). The future of assisted suicide and euthanasia. New Jersey and Oxfordshire: Princeton University Press.
Kerridge, I., Lowe, M., & McPhee, J. (2007). Ethics and law for the health professions (2nd edition). Sydney: The Federation Press.
Matzo, M. & Sherman, D. (2010). Palliative care nursing: Quality care to the end of life (third edition). New York: Springer Publishing Company, LLC.
Randall, F. & Downie, R. (2010). End of life choices: Consensus and controversy. Oxford and New York: Oxford University Press.
Schirm, V. & Sheehan, D. (2005). Conversations about choices for end-of-life care. Journal of Hospice and Palliative Nursing, vol. 7, no. 2, pp. 91-97. Web.
Singer, P. & MacDonald, N. (1998). Bioethics for clinicians: 15. Quality end-of-life care. 1998 Canadian Medical Association; 159 (2). Web.