A Good Death: The Modern Hospice Movement

Jessi Benson

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“She was at home, this is where she wanted to be. It wasn’t easy, but it was right.” He said this to me on his mother’s back porch after I pronounced her and finished providing post-mortem care. Her son went on to tell me she had a good life as we sat together waiting for transport to come and take her to the funeral home.

A week before, I sat on the same back porch in the still Tennessee heat with her immediate family to inform them she was entering the last stage of life. By this time she was no longer able to express her needs, but over the previous months, she made clear her desire to remain in her home, with her family, and not suffer. I Instructed the family on how and when to give her comfort medications and which symptoms to expect over the coming days. I listened to their concerns and answered their questions directly. She had what I consider a good death, which is the ultimate goal of hospice care.

However, in healthcare, I have more experience with what I consider a bad death. In early 2020, at the onset of COVID-19, I was employed at a long-term care facility. The facility was ill-prepared to manage the new, extremely deadly infection. The COVID-19 pandemic resulted in excessive and untimely death – according to the World Health Organization, the death toll associated with the COVID-19 pandemic was approximately 14.9 million worldwide between January 2020 and December 2021. It also produced the perfect conditions for a bad death. These conditions include social isolation, receiving unwanted medical interventions, being deprived of desired treatments, and lack of preparation for the dying patient.^[1] Restrictions on visitors and any ‘non-essential’ staff members during the pandemic resulted in many people dying alone without preparation or dignity.

I witnessed more bad deaths in medical-surgical units due to futile medical interventions and families’ refusal to let go. It’s often assumed that the hardest part of working in the medical field is losing patients to death, but it’s not. The hardest part is witnessing life and suffering prolonged unnecessarily. I’ve cared for patients who begged for death to come and relieve their pain.

It was only when I moved to a palliative care unit^[2] that I saw death could be done better. I learned a good death is possible with proper interdisciplinary care and planning. On this unit, visitor restrictions were lifted for dying patients, recognizing the importance of having loved ones present at the end of life. Constant pain and symptom relief were provided, prioritizing comfort. Not every death was a good one but we strived for it.

A “good death” is difficult to quantify. It is also not easy to make a consensus. It is something most of us don’t want to talk about or even think about. However, how to define a good death has been central to the modern hospice movement, shaping its history over the last six decades. Cicely Saunders’ modern hospice movement began in England in the 1960s. It wasn’t until the 1970s that it reached America. As a nurse and social worker, Saunders saw a need to be filled in treating the dying. To improve end-of-life care Saunders went on to become a physician and pain management researcher, turning hospice into a philosophy and changing the whole paradigm of dying.^[3]

Going back to medieval times, hospice meant a place of shelter. The word “hospice” derives from hospitium, sharing its origins with hospital and hospitality. During the Crusades, a hospice was where sick travelers could go to rest on a long journey. Hospices were often found in monasteries, not only caring for the dying but also the hungry and the poor. Death most often took place in the home.^[4] During the Industrial Revolution, advances in medicine and social trends, such as smaller households, moved care for the dying from the home to the hospital. By the end of the 1950s, a majority of deaths took place in hospitals. In hospitals, dying people were given futile and experimental treatments or deserted by their doctors. Patients often died alone in excruciating pain.^[5]

Cicely Saunders opened St. Christopher’s Hospice in South London in 1967, a 54-bed inpatient facility for the dying along with the world’s first home hospice services. St. Christopher’s combined compassionate care, pain management, teaching, and research. Saunders began by improving physical pain control for the dying with research on the use of morphine for end-of-life pain and scheduled pain dosing, whereby a patient didn’t need to wait till they were yelling out in pain before the next dose was given.

Saunders drew many of her ideas surrounding suffering, dignity, and death from Viktor Frankl, an Austrian psychologist, philosopher, and Holocaust survivor. Frankl’s “Man’s Search for Meaning” was published in 1959. Saunders references Frankl in a 1966 article, “The Care of the Dying,” where she notes, “We can learn from Frankl, a psychiatrist, who found a purpose and meaning in life and death in Auschwitz.”^[6]

Frankl wrote about his attempt to find meaning as a prisoner in a Nazi concentration camp: “Human life, under any circumstances, never ceases to have meaning, and that this infinite meaning of life includes suffering and dying … hopelessness of our struggles did not detract from its dignity and its meanings.”^[7]

Saunders acknowledged the whole person and not just the illness. Learning from Frankl, Saunders recognized the intrinsic value of the end of life and the meaning that could be derived from it. She uncovered a surprisingly novel concept in treating dying people: she listened to them.

When Saunders entered hospice care, it was common practice to inform the family but not the patient of a terminal illness. This is a practice I still see today in patients suffering from dementia at the end of life. Nevertheless, Saunders believed open communication was essential in treating the dying. She encouraged clinicians to engage with the emotional complexity of terminal pain by attending to what a patient says.

Saunders’ introduction of ‘total pain’^[8] aimed to address not just physical suffering in death and dying but also emotional, psychological, and spiritual suffering. Many of the concepts introduced by Saunders’ total pain theory can be identified in an analysis of numerous studies^[9] proposing 11 elements that contribute to dying well. These are, in order of frequency:

1. Relief from pain and other physical symptoms
2. Effective communication and relationship with healthcare providers
3. Performance of cultural, religious, or other spiritual rituals
4. Relief from emotional stress or other forms of psychological stress
5. Autonomy concerning treatment
6. Dying at the preferred place
7. Not prolonging life unnecessarily
8. Awareness of the deep significance of what is happening
9. Emotional support from family and friends
10. Not being a burden to anyone
11. The right to terminate one’s life

These 11 elements of dying well seek to continue the understanding of what constitutes a good death based on the preferences of the dying individual. Like Saunders, they focus on the dying person rather than the disease or illness. Relief from pain and other physical symptoms, effective communication, spiritual rituals, relief from emotional stress, autonomy, dying at the preferred place, not prolonging life unnecessarily, awareness of the deep significance of dying, and emotional support are all elements identified within Saunders ‘total pain’ theory as well as her focus on individualized care for the dying.

Not to be a burden to anyone can be addressed through Saunders’ shared views with Frankl in finding meaning at the end of life. If a dying person views the final stage of life as the burden they place on their loved ones, they are undergoing psychological suffering. The dying person may feel there is no meaning to be derived in their life and believe they no longer contribute to the lives around them. Saunders believed how a person mentally responds to dying contributes to their suffering.

All of these elements are possible to provide, except the right to terminate one’s life, which is illegal in most of the United States. It should be noted Saunders was opposed to euthanasia. In 1972 Saunders wrote, “Terminal care everywhere should be so good that no one ever asks for voluntary euthanasia.” She insisted that providing appropriate care and comfort to the dying could revive the desire to live.^[10]

In a 1992 editorial, Saunders encouraged the continued research, teaching, and debate surrounding euthanasia. She believed that suffering at the end of life was a valuable part of life and should not be abandoned or avoided. She also made note of the opportunity at the end of life to connect with family and resolve past issues.^[11]

Today, in Western medicine, the physical suffering of the dying is frequently addressed, but often, psychological and emotional suffering is still neglected and remains unattended. As a hospice nurse, most of my time is spent listening, providing emotional support, and educating over days to months, but the time is limited. This time limit and lack of preparation are major obstacles to providing a good death. When possible, conversations surrounding death should be had sooner. The time frame for providing a good death should begin at diagnosis of a terminal illness and extend beyond death, to provide support to the bereaved.

Most of the people I see are naive to hospice care and the discussion of death. They are unprepared for the inevitable, even after a diagnosis of a terminal illness years prior. Why are we not talking about death?

Well, there’s the obvious reason, which is fear. Death is often medicalized in Western culture, with only physical symptoms being treated. Society, in general, regards death as something to be resisted, postponed, or avoided.^[12] This is a missed opportunity – time that could be spent preparing for a good death.

Once a patient enters hospice care, goals shift from keeping the patient healthy and alive to maintaining their quality of life and comfort. This is a difficult transition not just for the dying patient, but for the providers as well. Talking about dying rarely comes naturally, but it can be learned. Medical providers report that they avoid end-of-life conversations because they don’t want to remove hope from patients and their families. But it was also reported dying patients and families feared a bad death more than death itself. Hope can be shifted from a cure to a good death. Death is a natural part of life, not a failure of medicine. The COVID pandemic brought to light the lack of research, energy, and resources available to the terminally ill. Cicely Saunders started a movement, but it’s up to us to continue and move it forward within the current medical, political, and economic climate. Preparing for a good death is the first step in providing one. The only way to prepare for it is to talk about it.

“You matter because you are you, and you matter to the last moment of your life. We will do all that we can not only to help you die peacefully but also to live until you die.” – Dame Cicely Saunders

Further resources:

https://www.who.int/teams/mental-health-and-substance-use/policy-law-rights

Notes

https://hospicefoundation.org/Hospice-Care/Caregiving

1. Nikita Simpson et al. “‘Good’ and ‘Bad’ Deaths During the COVID-19 Pandemic: Insights From a Rapid Qualitative Study,” BMJ Glob Health. 2021 Jun;6(6):e005509. ↑
2. Palliative care, like hospice care, is comfort and quality-of-life focused. Hospice care is a specific type of palliative care. The difference between palliative and hospice care is in the time, place, and services provided. ↑
3. The majority of biographical information in this article is derived from Caroline Richmond, “Dame Cicely Saunders,” British Medical Journal vol. 331,7510 (2005): 238. ↑
4. Paul E. Tatum et al. “Getting Comfortable with Death. Evolution of the Care of the Dying Patient,” Mo Med. 2014 Jul-Aug;111(4):298-303. ↑
5. Joy Buck. “Policy and the Re-Formation of Hospice: Lessons from the Past for the Future of Palliative Care,” J Hosp Palliat Nurs. 2011 Nov;13(6):S35-S43. ↑
6. Maxxine Rattner. “’Total Pain’: Reverence and Reconsideration,” Front Sociol. 23, no. 8 (Nov. 2023):1286208. ↑
7. Viktor Frankl, Man’s Search for Meaning (Boston: Beacon Press Books, 1959), 83. ↑
8. Joy R. Goebel et al. “Caring for Special Populations: Total Pain Theory in Advanced Heart Failure: Applications to Research and Practice,” Nurs Forum 44, no. 3 (July-September 2009): 175-85. ↑
9. Mehreen Zaman, et al., “What Would It Take to Die Well? A Systematic Review on the Conditions for a Good Death,” The Lancet Healthy Longevity 2, iss. 9, e593 – e600. ↑
10. Cicely Saunders, “The Care of the Dying Patient and His Family,” Contact 39 (1) (1972): 12–18. ↑
11. Cicely Saunders, “Voluntary Euthanasia,” Palliative Medicine (1992) ↑
12. David Clark, “Between Hope and Acceptance: The Medicalisation of Dying,” BMJ 13, no. 324 (April 2002): 905-7. ↑

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Featured image caption: Courtesy Kampus Production.