Educational Interventions

Background of the USA End-of-Life Care Practices

A. History of End-of-Life Care  

End-of-life care in the United States can be traced back to the 1960s.⁴² Before 1960, the medical field focused on saving and extending lives at all costs. The healthcare system was dominated by generations of physicians who viewed death as an enemy, and something to which patients should not surrender. There was a fine line between not giving up and providing patients with futile treatment. Healthcare was driven by the belief that hope drives good care.⁴³

Consequently, medical practitioners tried to give their utmost so as to keep the hope of their patients alive. The healthcare system encouraged this utopian dream of fighting mortality and aging. Patients and caregivers left decisions concerning treatment to doctors. Medical

practitioners administered aggressive treatments to patients even in situations where the patient’s state is irreversible. A large segment of the American citizens were dying in nursing homes and hospitals where they were subjected to medical indignities, deficient pain relief care, and indifference treatment of anxious friends and family members.

The concept of end-of-life care emerged in the 1960s. This concept entails providing

“interdisciplinary and supportive services to critically ill persons and their family caregivers that focus on alleviating suffering, facilitating end-of-life wishes and providing support to the

bereaved”.⁴⁴ It is a component of palliative care that focuses on providing care to patients at the end-of-life stage. The concept of end-of-life care emerged after the medical fraternity came to term with the inevitability of death. Medical practitioners came to accept that death is an inevitable part of humans and other living things. Physicians changed their paradigms from

trying to extend the life of patients at the terminal stage of the illness to focus on improving the quality of life of these patients. End-of-life care focuses on assisting patients to enjoy what life has to offer by decreasing pain and providing emotional and spiritual support. It also extends beyond the death of the patients by seeking to assist family members through the grieving process.

Several events shaped the development of the end-of-life care in the United States. A significant event was the establishment of the first hospice in the nation, the Connecticut Hospice.⁴⁵ This hospice began its operations in 1974 marking the onset of the hospice and

palliative care movement. Giovanni defined palliative care as an approach of boosting the quality of life of patients and their families facing life-threatening illness through the relief and

prevention of suffering.⁴⁶ The concept of palliative care extends the principle of hospice care to the broader population by ensuring that patients facing life-threatening condition receive relief care in the home environment. Palliative care transitions into hospice care when the condition of the patient worsen.⁴⁷ The hospice and palliative care movement shifted physicians’ attention from curing to providing care when dealing with patients who have irreversible conditions.

These two concepts became significant elements in end-of-life care. The two concepts supported physicians’ training in the care of the dying. The creation of these healthcare concepts also encourages an open discussion regarding the issue of death and dying.⁴⁸ Americans became more willing to accept death leading to better management of suffering.

The concept of palliative care also broadened the distinction between pain and suffering. People came to understand that patient experience other forms of suffering besides physical pain.⁴⁹ It gradually became clear that palliative care is not just provided in hospices and is not just for patients at the terminal stage of their illness. Another event that shaped the

development of the end-of-life care in the United States was the adoption of the Medicare Hospice Benefit, in 1982. The passage of this law established hospices as vital parts of end-of-life care. The concept of hospice care is anchored on the belief that every person has the right to die pain-free and with dignity.

Another event that shaped end-of-life care practices is the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT). SUPPORT was a five-year study that sought to examine the preferences of patients at the end-of-life stages concerning treatment. The Robert Wood Johnson Foundation sponsored this study after noting that medical practitioners were subjecting patients near the end-of-life to high-cost and high-tech intervention that were ineffective and contrary to the patients’ wishes. The study, which was published in 1995, confirmed that a majority of patients at the terminal stage of their illness were being

subjected to ineffective treatment against their wishes. Physicians rarely consulted prognosis data or inquired about patients’ preferences before establishing a care plan. It also established that most patients and families did not understand the treatment options available to them and to articulate their wishes. Results of the SUPPORT study highlighted the need for changes in professional and social norms and catalyzed the establishment of initiatives to improve end-of-life care. These initiatives focused on understanding the concerns of patients and their families, building supporting environment through legal and cultural means, increasing clinical capacity and developing successful models for delivering high-quality end-of-life care.

The establishment of organizations that advocate changes in the American end-of-life care is another event that shaped US end-of-life practices. The Americans for Better Care of the Dying (ABCD) is among these advocacy organizations. ABCD was a non-profit consumer membership organization came to being in 1997, with the aim of assuring quality of care for

patients at the end-of-life stage. The organization helped building momentum for fundamental reforms in the American end-of-life care. It informed the establishment of new methods and shaped public policies regarding end-of-life practices. ABCD experienced financial problems and closed doors in 2008. The Partnership for Caring (PFC) is another advocacy organization that shaped American end-of-life practices. PFC brought together representatives of healthcare organizations and initiatives that were concerned with end-of-life care such as the American Bar Association (ABA) and the Robert Wood Johnson Foundation (RWJF). PFC focused on

facilitating advanced care planning among patients at the end-of-life stage assisting them to complete living wills or designate healthcare surrogate. PFC partnered with ABA to publish an annual summary of legislations that affected advanced care planning in various states and ranked each state’s effort to improve end-of-life cares. This initiative brought substantive changes in laws governing end-of-life care. PFC also partnered with RWJF to establish a national program known as the Last Act. The Last Act focused on improving communication and decision-making among healthcare consumers regarding their own deaths, transforming the cultures of healthcare institutions and changing the cultures and attitudes of Americans towards death.

B. Moral Views  

The work of human healing has always been associated with ethics. Ethics refers not only to the rules, beliefs and customs of a given society; it also elucidates the scholarly effort to analyze these rules, beliefs, and customs. Jonsen linked the concept of ethics to three major topics; character, duty and social responsibility. ⁵⁰ The topic of character relates ethics with certain qualities. This ethical practice proposes that a good medical practitioner should exhibit