Hospice has provided society with a framework for cultural dialogue to address the physical and physiological needs of persons with terminal illnesses. A cultural revolution and revision of the perception of patient-centered care has allowed family and client participation at the discussion table. When life cycle events abruptly alter one's life journey, hospice and palliative care can attend to one's needs. However, a controversial statute has entered the law books in some states, giving precedence for the delivery of a prescription for medical aid in dying drugs. Individuals and physicians who follow the resident's state statutes' protocols can receive medical death in dying prescriptions to end one's life. Georgia Senate Bill 291 is currently in the legislative process for potential votes (Georgia Death with Dignity Act, 2020).
The National Quality Forum (NQF; 2006), in A National Framework and Preferred Practices for Palliative and Hospice Care Quality, defines hospice as:
A service delivery system that provides palliative care for patients who have a limited life expectancy and require comprehensive biomedical, psychosocial, and spiritual support as they enter the terminal stage of an illness or condition. It also supports family members coping with the complex consequences of illness, disability, and aging as death nears.
In a fragmented health system with little resources for our evergrowing older adult population, quality of end-of-life care may differ.
Estimates from the National Hospice and Palliative Care Organization (2019) indicate approximately 1.49 million Medicare beneficiaries elected the Medicare hospice benefit for ≥1 day in 2017. Of those who elected the benefit, 1.1 million died while receiving hospice services in the same year. The most frequent primary diagnoses associated with the beneficiaries were cancer diagnoses, accounting for approximately 31% of all those who elected the benefit. The Institute of Medicine's (IOM; 2015) report, Dying in America: Improving Quality of Life and Honoring Individual Principles Near the End of Life, concludes:
A person-centered, family-oriented approach that honors individual preferences and promotes quality of life through the end of life should be a national priority. This report provides a comprehensive assessment of the knowledge gaps, structural problems, and financial disincentives that hamper delivery of optimal care and makes cross-sectoral recommendations to achieve compassionate, affordable, sustainable, and effective care for all Americans.
The increase in prevalence of older adults with comorbidities and terminal illnesses has contributed to the acceptance of constructs based on theoretical frameworks in palliative care (IOM, 2015). Current research and data have shown a trend toward societal acceptance of hospice and palliative care (IOM, 2015). Political advocates have already made changes to the health care landscape and cycle of life. Oregon became a trendsetter in the use of medication in dying prescriptions (Oregon Death with Dignity Act, 1997, rev. 2019). By setting a precedent, other states have followed suit, as seen in the proposal of the Georgia Death with Dignity Act (2020). Key points of the Georgia Death with Dignity Act (2020) are as follows.
An adult resident of Georgia begins the process by making a verbal request for a prescription for a medical aid in dying medication. Requests cannot be due to age or disability and mandates physician validation of a terminal diagnosis with a prognosis of ≤6 months. To satisfy statute requirements, the individual voluntarily requests the prescription on two separate occasions, 15 days apart, with a follow-up written request for the prescription. A valid request must be signed and dated by the individual seeking the prescription and witnessed by at least two persons in the presence of the individual requesting the prescription. Parties witnessing the process validate the individual is of sound mind and capable of acting voluntarily. Witnesses must be disinterested parties, defined as “not related to the individual by blood, marriage or civil union, or adoption” (Georgia Death with Dignity Act, 2020, pp. 3–4). Witnesses cannot be a beneficiary of entitlement to any portion of the individual's estate upon death and “cannot be the individual's attending physician or power of attorney; or an owner or employee of a health care facility where the individual is receiving care” (Georgia Death with Dignity Act, 2020, p. 4). Individuals receiving the medical aid in dying prescription may rescind the request at any time regardless of mental status (Georgia Death with Dignity Act, 2020).
Acceptance of the benefits of medical aid in dying medication remains scarred due to the reluctance of approval by the American Medical Association and the National Commission of Human Subjects of Biomedical and Behavioral Research. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1979) published The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research, outlining basic ethical principles highlighted in human research. Three key elements of the report included: respect for person; beneficence; and justice.
By ensuring one's self-determination and autonomy, one ensures respect (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979), as seen when individuals make the decision to self-administer the medical aid in dying prescriptions (Georgia Death with Dignity Act, 2020). Researchers respect individuals' rights to self-determination, yet they are also under the guise of the Hippocratic maxim “do no harm” (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979) in juxtaposition with the Georgia Death with Dignity Act (2020).
Aging adults may often face difficult end-of-life decisions based on the presence of multiple chronic diseases and lack of access to quality health care and psychosocial support. Dying with dignity laws vary by state, but are specific in that the individual who elects to voluntarily participate in physician-assisted suicide must meet certain criteria. One of the requirements by each state includes language that specifies the individual must have a terminal illness with a prognosis of ≤6 months to live.
The laws are stringent and the steps one must complete to elect this process are complex. Many states have paralleled the language and requirements in their legislation around Oregon's Death with Dignity Act (1997, rev. 2019), which has been highly scrutinized and studied and is thought to preserve misuse and protect patients. Having an extraneous process prevents people who may be seeking to end their life for reasons other than terminal illness. Many states' requirements mandate “two physicians confirm the patient's residency, diagnosis, prognosis, mental competence, and voluntariness of the request” (Death with Dignity, 2020, para. 4). The proposed legislation in Georgia would follow the same statues.
The ethical principle, justice, creates a greater convoluted spiral of conversation over what is fair and who is deserving of the outcome. One may ask, how would one person's death benefit another person when the ultimate sacrifice is death? Is this practice fair? Beneficence is ambiguous when researchers need to respect the individual's right to self-determination, while at the same time “maximizing benefits and minimizing possible harms” (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979, p. 5). When researchers are bound to beneficence as described in the Belmont report (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979), one can argue that to “maximize the benefits and minimize the harm,” (p. 5) an increased attrition rate in mortality of research participants is not an outcome promoting benefits to participants. The concept of patient-centered care or respect for persons and rights for self-determination may be reason enough for persons to choose their own destiny. However, research studies remain under the constraints of researchers' affiliates' Institutional Review Boards, leaving future research in the hands of committees that may or may not have progressive views on patient rights to self-determination.
The Georgia Death with Dignity Act Senate Bill 291 remains in the Georgia Senate. The Georgia Senate reconvenes in January 2021. Currently, there are no changes or prefills scheduled for the Bill. As progressive medical standards become more prevalent, statutes created for terminal patients to end one's life may need to have enough flexibility to allow its practice, yet at the same time protect the rights of individuals or organizations where its implementation compromises one's moral or religious beliefs. Advocates and opponents for Senate Bill 291 need to take a step forward to write legislators to have their voices heard. Changes made in the political arena may ultimately affect clinical best practices.
Joanne M. Zanetos, DNP, MSN, RN
Alan W. Skipper, DNP, APRN, FNP-BC
Georgia Southern University