End of life care in the U. S. and all over the world is a controversial issue that raises many ethical dilemmas and debates. Improving end of life quality has long been an important goal for many policymakers. However, not all of the decisions taken so far have led to positive changes. For instance, the concept of death with dignity has created an opportunity for some medical practitioners to justify euthanasia, whereas Advance Directives turned out to be a substantial bureaucratic obstacle to quality medical care. This research focuses on the various factors affecting the quality of the end of life, such as medical technology development, organ donation, planning, and so on, to explore and propose new ways for nurses to achieve improvement of life quality of dying patients.
Advance Directives: History, Purpose, and Usage
Advance Directives, or a living will, is a document in which a person designates a surrogate decision-maker and stipulates the nature of medical actions to be taken when he or she is not physically or mentally capable of making certain healthcare decisions. Sabatino (2010) explores the history of Advance Directives in the United States. The author explains that the first proposition with regards to planning has been developed by Luis Kutner, a human rights lawyer, in 1969 (Sabatino, 2010, p. 212). However, the decision to protect the person’s right to make choices regarding their health towards the end of life only came about in the mid-1970, with the introduction of new medical technologies, which made it harder for both medical professionals and patients to see the difference between saving a life and prolonging the suffering (Sabatino, 2010, pp. 212-213). The government considered it impossible to set legal boundaries for this case, instead deciding to let patients decide for themselves whether or not they wanted the doctors and nurses to prolong their lives at all costs (Sabatino, 2010, p. 2013). By the end of 1986, forty-one states have adopted the laws allowing for Advance Directives to be set by the patients.
According to the initial idea, Advance Directives were to become “the primary legal tool to communicate formally one’s health care wishes regarding end-of-life care and, presumably, to enhance the likelihood that one’s wishes are followed by health care professionals” (Sabatino, 2010, p. 212). The revision of the power of attorney statute in mid-1980s also allowed patients to designate a surrogate decision maker in case of incapacity, who would have the power to make health care choices for the principal, whereas the introduction of new DNR regulations in the 1990s allowed emergency medical staff not to proceed with saving life if the patient was wearing a special bracelet indicating his or her agreement with the physician to not be resuscitated (Sabatino, 2010, p. 214). By 2000s, sixteen states have merged all three concepts into a single Advance Directive for Health Care, a number which has increased to twenty-five by 2010 (Sabatino, 2010, p. 216).
Advance Directives: Pros and Cons
The main benefit of the current Advance Directives is that they secure the patient’s right to spell out health care choices in advance and to avoid unwanted resuscitation in emergency care settings; some states also include the power of attorney with regards to making health care decisions under Advance Directives (Sabatino, 2010, p. 217). Advance Directives also provide a sense of empowerment to the individual, which alleviates some of the psychological pressure caused by approaching the end of life, as well as the feeling of helplessness associated with the declining physical or mental capacity: “Arguably, following advance directives provides the best means of respecting the patient’s wishes and preserving autonomy when the patient no longer has decision-making capacity” (Lawrence & Brauner, 2009, pp. 571-572).
However, there is still a lot of criticism surrounding the Advanced Directives. For instance, Lawrence and Brauner (2009) state that one of the main weaknesses of the Advanced Directives is the lack of specifics: “many decision makers still face difficult questions about what interventions and situations are covered by the directive” (p. 572). Moreover, there is a possibility that the patient is not fully aware of what certain medical services involve, and even of the certain implications of Advanced Directives, which leads to the fulfillment of Advanced Directives rather than the patient’s wishes (Lawrence & Brauner, 2009, p. 572). Such a fragmented structure of Advanced Directives makes it impossible for the caregivers to ensure a holistic approach to the end of life care.
There is also a persistent belief that allowing a surrogate decision maker to decide for the patient is unethical, as either the surrogates’ judgement is impaired due to their close connection to the patient or they are not making genuine decisions, merely re-stating the patient’s prior wishes (Lawrence & Brauner, 2009, p. 574). Furthermore, placing a burden of end of life decision-making on a family member can lead to many personal issues, such as persistent guilt, and thus trigger conflicts within the family.
Ethical Dilemmas and Medical Technology
As mentioned above, the primary need for the end of life planning and empowering the patient in choosing the end of life options were created by the swift advancement of medical technology (Karnik & Kanekar, 2016, p. 1). The introduction of the various life support equipment, for instance, allowed supporting the patient’s life even when most of his or her vital systems have terminated, thus interfering with the norms of natural death (Karnik & Kanekar, 2016, p. 1). Such intervention caused many ethical speculations. For example, Karnik and Kanekar (2016) argue, “The advanced technologies hold no promises for recovery. These treatments can also lead to few humiliating and undignified situations for the patients, which can be emotionally burdensome” (p. 3). Other ethical implications of the use of medical technology in futile cases are associated with the high cost and resources requirements of life support: some believe that it is unethical to spend such a large share of the healthcare budget and resources on end of life support instead of contributing it to the treatment of non-terminal patients (Karnik & Kanekar, 2016, p. 4).
Dying with Dignity
Another ethical implication of the use of life support technologies is associated with the religious and spiritual paths of a person. Different faith traditions have different understandings of life and death. However, the vast majority of them advocates for natural timely death instead of altering natural death patterns by the use of medical technology. Catholic tradition, for example, promotes the notion of dignified death, or death with dignity. Catholicism views human life as a fundamental good; nonetheless, it also teaches that life is not an absolute value to be preserved at all costs (Daode, 2011, p. 35). This, however, does not mean that the Catholic tradition advocates euthanasia; on the contrary, the taking of life in any form, including euthanasia, and for any reason is condemned by the Catholic doctrine (Daode, 2011, p. 36). Nevertheless, Catholicism has its view of the notion of dignified death. Daode (2011) explains that in the Catholic tradition, death is viewed as an opportunity to meet Christ by entering another stage of spiritual existence (p. 39). It is, therefore, important not to interfere with the natural death pattern and to be well-prepared for the final journey: “A person not only has to be able to satisfy his or her moral duties and family obligations; he or she also has to prepare himself or herself with full consciousness for meeting Christ” (Daode, 2011, p. 39).
Societal views on death with dignity are also present in the contemporary world. As Daode (2011) notes, “there is tremendous societal pressure on a dying person to be a good patient while trying to experience the good death. These pressures shape patient, caregiver, and family choices in end-of-life situations” (p. 34). Indeed, the concept of dying with dignity can be regarded as a set of norms for a dying person on how to die. The principles of dignified death mentioned by Guo and Jacelon (2014) insist on maintaining autonomy, independence, and meaningful relationships, not suffering from symptoms, and being respected by self and others (p. 934). However, in many cases, particularly with terminal conditions, such as cancer, or mental illnesses, such as Alzheimer’s disease, it is impossible to comply with these requirements. In such circumstances, dying with dignity requires the patient to end his or her life before the symptoms get worse, thus becoming synonymous to euthanasia (Daoda, 2011, p. 34).
Hospice vs. Palliative Care
Hospice care was first introduced in mid-20th century London and reached the United States in the 1970s (Kaplan, 2010, p. 42). The founding principle of hospice care is that every person deserves to die in peace and with dignity, whereas his or her family and loved ones also deserve to receive the necessary support throughout this difficult time (Kaplan, 2010, p. 42). Hospice care is not therapeutic or curative; it is provided to people of any age, religion, ethnicity, and with any terminal illness, who have ceased fighting their condition and want to accept their death in the best way possible (Kaplan, 2010, p. 42). In the United States, hospice care is covered both by Medicare and by Medicaid, as well as by private health insurance plans and other care organizations, and it can be provided either at home or in freestanding hospice centers, hospitals, and nursing facilities (Kaplan, 2010, p. 42).
Palliative care, on the other hand, provides care and therapy to people with life-threatening conditions and their families (Kaplan, 2010, p. 42). Palliative care providers include a wide variety of specialists, such as physicians, social workers, nurses, and so on; it is a relatively new program, which is provided in over 1200 hospitals in the United States (Kaplan, 2010, pp. 42-43). Contrary to hospice care, palliative care can be accessed at any stage of the disease and provides therapeutic and curative care as well as other services (Kaplan, 2010, p. 43).
Both types of care aim to adhere to the ethical principles of autonomy and beneficence, as both palliative and hospice care are aimed at minimizing the patient’s suffering and improving the quality of patient’s life even in futile settings. Therefore, the double effect doctrine is also applicable to both cases, since for most hospice and palliative care patients it is more important to escape the pain than to avoid complications and side effects resulting from the use of painkillers or sedatives.
Despite the substantial efforts of the various non-governmental organizations, as well as of the United States government to promote organ donation, the number of organ donors available is not enough to cover the needs of the entire population. One of the reasons for this is that most people do not want to be donors as they are not educated on the matter and have wrong information about certain facts that are crucial to organ donation. For example, one of the common misconceptions about organ donation is that it is not supported by most religions of the world. However, according to the National Foundation for Transplants (NFT, n.d.), this is untrue, as the country’s most popular religions – Buddhism, Catholicism, and Judaism – all support organ donation to help others (pp. 1-2). Secondly, many people believe that certain factors, such as older age or extensive medical history, would not allow them to become donors. This is also a misconception since there is no age limit for becoming an organ donor, while medical history and organ condition are only evaluated when the donor is dead (NFT, n.d., p. 2). Some people also believe that becoming a donor will incur large surgical costs, which is also not true, as all expenses related to organ and tissue donation are covered either by the government or by private sponsor organizations (NFT, n.d., p. 3).
Conclusion: The Role of Nurses in End of Life Care
Whether in a hospital, hospice, or palliative care department, nurses are irreplaceable for end of life patients and, therefore, they can improve the quality of end of life care for their patients both on acute and community levels.
For instance, it has been reported that the connection between the dying or terminally ill patient and his or her nurses is critical for the patient at the end of life stage (Lewis, 2013, p. 23). Thus, building a positive, friendly, and empathetic relationship with the patient is crucial for improving the quality of care, particularly if the patient has recently been transferred to the end of life care facility (Lewis, 2013, p. 22). It is also important for the nurse to discover the patient’s spiritual or cultural values and acknowledge them while helping the patient to make health care decisions (Beckstrand, Wood, Callister, Luthy, & Heaston, 2012, p. 8).
On the community level, nurses can facilitate the dialogue between the patient’s family and the healthcare team by uniting the goals of both parties in the treatment plan and ensuring that physicians share all the relevant treatment information with patients and their families (Lewis, 2013, p. 24). Nurses can also help the management and policymakers to understand what needs to be done to improve the quality of end of life care in the facility. A study by Beckstrand et al. (2012) showed that many nurses have concrete propositions on how to improve the end of life service: for instance, some of the nurses surveyed insisted that allowing family presence in emergency care at the end of life stage is crucial to the peaceful death of the patient (p. 10).
Overall, end of life care is a multi-dimensional subject that requires multiple perspectives to balance out the ethical issues and the patient’s interest. Being involved with patients each day, end of life care nurses have a great impact on the patient’s overall experience, cooperation between all the people involved, and on improving end of life care in general.
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Daode, M. S. (2011). Dignity of dying patients in Buddhist and Catholic ethics: Divergence and convergence. Studia Bioethica, 4(3), 34-41.
Guo, Q., & Jacelon, C. S. (2014). An integrative review of dignity in end-of-life care. Palliative Medicine, 28(7), 931–940.
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