Hospice and Palliative Care at the End of Life

Gordon H. Cook Jr.; Ordained Servant: June–July 2024

Jim, a ruling elder, was assessed for pain in his abdomen. Tests indicated cancer, and he was referred to an oncologist. When the congregation learned the news, they joined together in earnest prayer for their beloved elder. An initial round of chemotherapy resulted in shrinking the tumor, allowing surgical removal. The successful surgery was a great encouragement to all—answered prayer.

Months later a follow-up visit found abnormal bloodwork. Testing and an MRI showed multiple tumors in the abdomen, including his liver. The slightly yellow pallor of Jim’s skin now took on a more sinister connotation.

His oncologist ordered a second round of chemotherapy, the same treatment which had been successful before. The church returned to earnest prayer. This time testing indicated the chemo was having little effect on the tumors. The oncologist put Jim into the hospital to administer a much stronger chemotherapy requiring continuous cardiac monitoring. Now oncology and internal medicine were joined by cardiology (the number of Jim’s physicians was multiplying).

From the first treatment, the cardiac monitors showed signs of trouble ahead. An irregular pulse and widely varying blood pressures forced this round of chemotherapy to be suspended. Jim began to experience low oxygen levels, so a pulmonologist and supplemental O₂ were ordered. Jim found himself shuffled in and out of the ICU and the OR, where several urgent procedures were undertaken.

Internal medicine sounded the alarm that Jim’s liver function was declining. Both oncology and internal medicine urged the immediate resumption of chemotherapy. However, cardiology and pulmonology resisted, cautioning that Jim’s heart and lungs could not sustain added stress.

Jim developed a fever. Tests indicated sepsis. High dose antibiotics were administered. For a couple of days, Jim seemed to improve. Everyone’s hopes soared. Then came a bowel infection. Further, the irregular heartbeat was becoming more problematic.

Thus far the family had been doing rather well in supporting Jim. But the barrage of decisions was taking its toll. They watched as common treatments gave way to last ditch efforts. The family was on an emotional rollercoaster which was becoming intolerable, with no exit in sight. The church was informed that things were getting serious for Jim and asked to pray even more.

Internal medicine, trying to deal with rapidly escalating pain due to liver involvement, asked for a palliative care consult. The palliative care doctor reviewed Jim’s case, made some recommendations for pain management, and suggested that the family be given the option of palliative care. The next day, Jim’s family sat down with a palliative care nurse, a social worker, and a chaplain to talk about alternatives for his care. Later, that afternoon, they all sat down again in Jim’s room and offered to take him onto palliative care. Jim, worn out from too many medical procedures, wholeheartedly agreed. The discussions then turned to various end-of-life decisions.

Have you ever watched a circus performer who spins plates on sticks. Inevitably, one of the dishes will begin to wobble. The performer will then focus all his efforts on bringing that plate back under control. But this will leave another unattended, and more plates will begin to wobble. At some point, all the plates are wobbling, and a terrible crash is just ahead. Now imagine a well-trained team of professionals who can come into the picture and gently take each plate down from its perch. With the last plate, the team may provide lunch for the performer. Welcome to palliative care! In Jim’s case, most of the monitors and many of the tubes and hoses were removed, allowing him to move about freely for the first time in several weeks. Only those which were directed toward providing comfort were left in place. The four specialists stepped into the background, still available if needed, but now in a supporting role. In their place was the one palliative care physician, along with a team of professionals accustomed to working together. All of them were working together for a common purpose, to help Jim live as fully as possible, as comfortably as possible, for as long as possible.

The real world is not as idyllic as I am describing. The dying process can be challenging under the best of circumstances. But a good palliative care team can transform a situation, literally overnight, shifting from curative treatment toward comfort care. The patient who just the day before was being whisked from one procedure to another is now sitting on a recliner, uninterrupted, surrounded by his family and friends. Smiles and stories replace worried looks and endless decisions. The noisy alarms are replaced with headphones bringing favored music or a digitalized reading from Scripture. X-rays and CAT scans are now replaced by family selfies. Underlying all this is the acceptance of a shared assumption. Jim is going to die. (To be theologically accurate, I should add, “unless Christ returns first!”)

If you are ready to admit it, we are all going to die unless the Lord returns first (Heb. 9:27; cf. Rom. 5:12; Gen. 3:19; Job 14:5; 30:23). This includes you, and the members of your family and of your congregation, your neighbors and friends, the people you are familiar with and those who are total strangers. A person begins to die the moment they are born, because our “first parents fell from the estate wherein they were created” (WSC 15), and so all became sinners. “All mankind by their fall lost communion with God, are under his wrath and curse, and so made liable to all the miseries of this life, to death itself, and to the pains of hell forever” (WSC 19). Thanks be to God who “having out of his mere good pleasure, from all eternity elected some to everlasting life, did enter into a covenant of grace to deliver them out of the estate of sin and misery, and to bring them into an estate of salvation by a Redeemer” (WSC 20).

Reformed theology becomes real life experience in palliative care. What do you expect concerning your death? Do you want to die in a hospital ICU, attached to IVs, O₂ tubes, and monitors? Or would you prefer to be in your own home, comfortable in your own bed, surrounded by loved ones and friends, listening to your favorite music?

Statistically, here in America, you are slightly more likely to die in the hospital than in other settings. The statistics for 2018 in the United States[1] are as follows:

• Deaths in a hospital – 35.1%
• Deaths at a private home – 31.4%
• Deaths in an extended care facility (e.g. nursing home) – 26.8%

The rise in hospice has significantly altered these statistics, allowing more people to die in their own homes.

Hospice is

a program that gives special care to people who are near the end of life and have stopped treatment to cure or control their disease. Hospice offers physical, emotional, social, and spiritual support for patients and their families. The main goal of hospice care is to control pain and other symptoms of illness so patients can be as comfortable and alert as possible.[2]

Palliative Care is

Care given to improve the quality of life and help reduce pain in people who have a serious or life-threatening disease. . . . The goal of palliative care is to prevent or treat, as early as possible, the symptoms of the disease and the side effects caused by treatment of the disease. It also attends to the psychological, social, and spiritual problems caused by the disease or its treatment. . . . It may also include family and caregiver support. Palliative care may be given with other treatments from the time of diagnosis until the end of life.[3]

Hospice and Palliative Care: A Brief History

Hospice and palliative care are often confused. They share a common history. Hospice can be traced back to the time of the Crusades, when places of respite and healing called “hospices” were established for crusaders traveling to and from the Holy Land. In 1113 AD the hospitallers of St. Johns captured the Island of Rhodes and established a hospice hospital there.[4] The hospice tradition was revived in the seventeenth century when the Sisters of Charity opened a number of houses to care for orphans, the poor, the sick, and the dying. The Irish branch of this order founded Our Lady’s Hospice for the care of the dying in Dublin (c. 1880). Later, in 1902 they founded St. Joseph’s Hospice for the dying poor in London. In 1967, Dame Cicely Saunders opened St. Christopher’s Hospice in southwest London and served as its first medical director from 1967–1985. She based her hospice care upon her idea of “total pain,” distress which includes physical, emotional, social, and spiritual dimensions.[5]

In 1963, Dame Saunders lectured at Yale University, sharing her ideas of specialized care for the dying in the United States. Elizabeth Kubler-Ross, M.D. authored On Death and Dying, in 1969, sparking an international discussion of end-of-life issues. In 1974, Florence Wald, along with two physicians and a chaplain, founded the Connecticut Hospice in Branford, the first hospice in the United States.[6]

Also in 1974, Dr. Balfour Mount, a surgical oncologist at the Royal Victoria Hospital of McGill University in Montreal, coined the term ‘palliative care’ to avoid the negative connotations of the term ‘hospice’ in French culture. He introduced the innovations of Dr. Saunders into Canadian, academic teaching-hospitals, focusing on holistic care for people with chronic or life-limiting diseases and their families.[7]

The National Hospice Organization (NHO) was established in 1978 to promote the concept of hospice care in the United States. The US Congress included a provision to create a Medicare hospice benefit in 1982–3. COBRA (1985) made this benefit permanent, providing Medicare funding for those who choose hospice in their final months of life. The Veterans Administration’s offerings for care for veterans was supplemented by a hospice benefit in June of 1995. In 2000, the NHO changed its name to National Hospice and Palliative Care Organization (NHPCO).[8] The American Board of Medical Specialties recognized the subspecialty of hospice and palliative medicine in 2006. By this time, hospice and palliative care were well established in the United States and being developed worldwide.

A Comparison of Hospice and Palliative Care

In philosophy and approach to care, hospice and palliative care are very similar:

• Both arise from a concern for compassionate care for the terminally ill.
• Both focus on comfort care, rather than curative care.
• Both place a premium on quality-of-life, rather than longevity, generally involving less aggressive end-of-life treatment. 
• Both follow the express desires of patients and families, either directly or through advanced directives.
• Both employ an interdisciplinary team, bringing together a cohesive team of doctors, nurses, social workers, chaplains, associated medical professionals, and volunteers.
• Both seek to support people, enabling them to live as fully as possible, as comfortably as possible, for as long as possible.
• Both affirm life, but do not postpone or prolong death.
• Both enjoy high levels of patient and provider satisfaction.
• Both provide exceptional symptom control.
• Both result in fewer intensive hospital admissions during the final month of life.
• Both have a strong spiritual component, including regular chaplain visits.
• Both show significant cost savings when compared with typical treatment at the end of life.[9] These cost savings have drawn the attention of hospital administrators and insurance companies, helping to explain the rapid growth in both programs.
• People with terminal illness tend to live longer with hospice or palliative care than people with the same condition who opt to continue curative treatments. [10]

The differences between hospice and palliative care include the following:

• All hospice care is palliative, but not all palliative care involves hospice. [11]
• Hospice is funded by Medicare, along with other insurance packages.[12] Palliative Care does not share this funding source, but its cost benefits have attracted many insurance companies.
• Hospice has strict criteria for admission. The patient must have a terminal illness and a prognosis of six months or less.[13] Because palliative care does not have this funding source, it is open to anyone regardless of prognosis. Some people receive palliative care alongside curative care. This allows palliative care to become involved in the patient’s journey much earlier. Palliative care teams often provide consults for cases that do not involve terminal illness, for patients who are struggling with comfort care issues, such as pain management.
• Hospice, here in the United States, is primarily home based, including private residences and long-term care facilities. There are some hospice facilities scattered around the nation. In contrast, palliative care is generally provided in hospitals or medical treatment centers.
• Currently, hospice is more readily available throughout the United States. Many areas have two or more hospice agencies, some non-profit, others for-profit, but all Medicare certified. Palliative Care is quickly gaining ground.[14]
• Here in the United States, hospice has a strong volunteer component, required for all Medicare certified hospice agencies. Some palliative care programs, modeled on hospice, include a volunteer component, but this is optional.

Spirituality and Religion in Hospice and Palliative Care

As religious leaders, we are perhaps most interested in the spirituality and religious services offered by hospice and palliative care. Chaplains distinguish between a person’s spirituality and their religious beliefs and affiliations. Spirituality focuses upon meaning in life and meaningful relationships (with God, self, others, and the world around us). Religion denotes an organized system of beliefs and practices.[15] For many within the OPC, our religion expresses our spirituality in concrete form, and our views of meaning and relationships are shaped by our religious beliefs. For others, religion plays a very small part in their lives, or no part at all, yet they are able to articulate a philosophy of life, as well as spiritual needs both met and unmet.

Chaplains, while trained and able to deal with religious issues, tend to focus on spirituality and spiritual needs. A chaplain’s assessment of a patient’s well-being has less to do with what faith community they attend and more to do with what makes their life worth living, how they understand their health issues in connection with that sense of meaning, and where they find the personal strength to address health issues.

In contrast, as a minister, ruling elder, or deacon your focus should be upon supporting your parishioner’s faith and relationship with God through Jesus Christ, especially as they approach the end of life. Your task is better defined, but just as challenging. Spiritual concerns such as guilt, fear, isolation, alienation, the inability to participate in religious worship or reading Scripture or praying may result in spiritual distress and should be compassionately addressed.

Concerns for the Christian in Hospice or Palliative Care

The Use of Opiates

The use of opiates (e.g. oxycodone, hydrocodone, morphine, fentanyl) has become extremely controversial in our society. Today, every prescription for these and similar medications is closely scrutinized, and their use for pain management has been radically reduced.

Scripture raises important concerns about opiate use. It calls us to preserve our ability to think clearly. It does so negatively in its prohibition against drunkenness (e.g. Eph. 5:18) and positively with its call for sober mindedness (e.g. 1 Thess. 5:6), specifically to allow prayer (e.g. 1 Pet. 4:7). When opiates are used wisely for pain management alone, they can be a help to clear-mindedness. But if used excessively or for purposes other than the treatment of physical pain, they are both physically and spiritually dangerous.

Hospice and palliative care make extensive use of opiates. Both programs affirm that patients have a right to be as free of pain as possible.[16] These powerful medications are used by well-trained and experienced medical professionals as important tools to relieve the significant pain sometimes associated with the dying process.

Palliative care and hospice also have other tools for pain relief. For example, pain associated with spiritual distress can be addressed by chaplains with prayer more effectively than medications.

The Use of Cannabis

Along similar lines, as various States have legalized the use of Cannabis, this has been included for palliation by some medical professionals. Too often this is employed without supporting research regarding claims of efficacy. While some professionals may advocate for the use of these substances, it is the patient and the patient’s family who determine if they are used.

One devoutly religious patient with throat and neck cancer was encouraged to use CBD oils to dry up secretions associated with his condition. This is one area where medical research has demonstrated real benefit.[17] He spent several hours with the chaplain weighing the pros and cons of using these oils. The chaplain asked how he would know if the oils were being effective or not. He answered, “I think I would find myself writing some very funky music.” The patient tried the oils but felt that the benefit was not cost effective (he was rather frugal).

Palliative Sedation

A controversial aspect of pain management for hospice and palliative care is the use of “palliative sedation.”[18] In palliative sedation, medications are administered to render a patent unconscious and thus free from pain. The purpose of this treatment is purely palliative, seeking to bring comfort for someone when all other options for palliation have failed. While the goal is not to kill the patient, it comes dangerously close to euthanasia or physician-assisted suicide, raising serious questions regarding the Sixth Commandment. Generally, this is limited to the final hours or days of life and only for a patient experiencing intense suffering. (In my many years of hospice chaplaincy, palliative sedation was only considered once, and then ruled out when the pain was brought under control by pain medications.)

Flirtations with Assisted Suicide

While hospice and palliative care take no side in the current debates about assisted suicide, their focus on quality of life over longevity might lead some to expect that they would favor such an approach. The fact is, when symptoms are well managed and patient dignity maintained, the pressure to end one’s own life is significantly reduced.[19] I have never experienced a patient who was assisted in suicide during my years of hospice chaplaincy. However, I did have patients who inquired about the availability of this option. These often led to long discussions as to why the patient might be seeking such an escape.

The Church’s Role

Hospice in America has always had a strong volunteer emphasis, providing respite and other personal support for patients and families on hospice. Hospice volunteers are well-trained people who show compassion and kindness regularly. They provide respite for families who provide the bulk of care for hospice patients.

This is an opportunity for members of your congregation, particularly those who are retired, to make a significant contribution in your community. It will allow your members to have meaningful interactions with people who are hurting, and thereby grow in their own walk with the Lord. Hospice volunteering is a diaconal type of ministry, not usually involving evangelism. Still, it can provide a major source of outreach into your community.

Palliative care and hospice often change our prayers for those who are dying from desperate pleas for God’s healing to a recognition of God’s abiding presence. They can foster an awareness that our lives are in God’s hands, that he is truly good, and his steadfast love endures forever. Instead of telling God what to do in our prayers, it allows us to pray, “Thy will be done,” in a more meaningful way, ready to wait upon the Lord, ready to submit ourselves to Him!

The pastor may feel that his role as a shepherd caring for the flock of God is being supplanted by the palliative care team, and especially the involvement of a board-certified hospice and palliative care chaplain. Often this is the pastor’s first time dealing with matters of death and dying within his congregation, while the chaplain has supported hundreds of patients in similar circumstances. As under-shepherds of the Lord Jesus Christ, the Great Shepherd of the Sheep, a pastor should be quick to humble himself, desiring the best possible care for the member of his congregation. Do this and the pastor may find his own unique role in the palliative care of this church member. The chaplain may have more knowledge and skill at assessing and intervening in the spiritual needs of this member. But it is the pastor who has the greater freedom in bringing Christ from a Reformed and biblical perspective, the good news which everyone needs to hear. Allow the chaplain to focus on the existential and emotional work which may need to be done. You focus on the ministry of Christ to the person who is dying.

Endnotes

[1] QuickStats: “Percentage of Deaths, by Place of Death,” National Vital Statistics System, United States, 2000–2018. MMWR Morb Motal Wkly Rep 2020;69:6111. DOI:http://dx.doi.org/10/15585/mmwr.mm6919a4.

[2] “Hospice” National Cancer Institute (NCI Dictionary of Cancer Terms) https://www.cancer.gov/publications/dictionaries/cancer-terms/def/hospice/.

[3] “Palliative Care” National Cancer Institute (NCI Dictionary of Cancer Terms) https://www.cancer.gov/publications/dictionaries/cancer-terms/def/palliative-care.

[4] Stephen R. Connor, Hospice and Palliative Care, 2nd ed. (London: Routledge, 2009), 3–4.

[5] Caroline Richmond, “Dame Cicely Saunders, founder of the modern hospice movement, dies,” BMJ, 2005, https://www.bmj.com/content/suppl/2005/07/18/331.7509.DC1.

[6] “History of Hospice,” National Hospice and Palliative Care Organization, https://www.nhpco.org/hospice-care-overview/history-of-hospice/.

[7] Matthew J. Loscalzo, “Pain Management and Supportive Care of Patients with Hematological Disorders,” Hematology Am Soc Hematol Educ Program, 2008, 465. https://doi.org/10.1182/asheducation-2008.1.465.

[8] “History of Hospice.”

[9] Robin Bennett Kanarek, Living Well with a Serious Illness (Baltimore: Johns Hopkins University Press, 2023), 43.

[10] Kanarek, Living Well with a Serious Illness, 25.

[11] Connor, Hospice and Palliative Care, 6.

[12] Medicare funds 100% of the costs of hospice care under Title 42 of the Code of Federal Regulations, subpart G, Payment for Hospice Care. The Hospice benefit is available to those enrolled in Medicare Part A (Hospital Insurance) or in a Medicare Advantage Plan. DHHS, US, Centers for Medicare & Medicaid Services, Medicare Hospice Benefits, 2024, https://www.medicare.gov/Pubs/pdf/02154-medicare-hospice-benefits.pdf.

[13] Hospice requires that a person must have a terminal illness certified by a hospice physician, meaning that if left untreated, their illness would normally result in death within six months or less. This determination can be quite challenging. While many cancers follow a predictable course, other life-limiting illnesses (e.g. cardiovascular disease, pulmonary disorders, dementia, stroke, etc.) are far less predictable. The patient must also sign a statement opting for hospice care, rather than care directed toward seeking a cure. And they must agree to receive care by a Medicare certified hospice agency.

[14] As of 2014, 98% of National Cancer Institute cancer centers reported having a palliative care program. David Hui, Ahmed Elsayem, Maxine De la Cruz, Ann Berger, Donna S Zhukovsky, Shana Palla, Avry Evans, Nada Fadul, J Lynn Palmer, Eduardo Bruera, “Availability and integration of palliative care at US cancer centers,” JAMA, 17:303 (11) (March 2010): 1054–61. https://pubmed.ncbi.nlm.nih.gov/20233823/#:~:text=National%20Cancer%20Institute%20cancer%20centers,50%20%5B56%25%5D%3B%20P%20%3C%20.

[15] A far more precise definition of religion and spirituality can be found in Karen E. Steinhauser, et al., “State of the Science of Spirituality and Palliative Care Research, Part 1: Definitions, Measurement, and Outcomes,” Journal of Pain and Symptom Management 54, no. 3 (September 2017), 430. https://pubmed.ncbi.nlm.nih.gov/28733252/, doi: 10.1016/j.jpainsymman.2017.07.028.

[16] “Palliative Care Methods for Controlling Pain,” Johns Hopkin’s Medicine. https://www.hopkinsmedicine.org/health/wellness-and-prevention/palliative-care-methods-for-controlling-pain.

[17] Kifah Blal, Elazar Besser, Shiri Procaccia, Ouri Schwob, Yaniv Lerenthal, Jawab Abu Tair, David Meiri, Ofra Benny, “The Effect of Cannabis Plant Extracts on Head and Neck Squamous Cell Carcinoma and the Quest for Cannabis-Based Personalized Therapy,” PubMed (NIH), “Cancers,” 2023, 497, https://pubmed.ncbi.nlm.nih.gov/36672446/ doi: 10.3390/cancers15020497.

[18] The information in this section is drawn from an article by Poonm Bhyan, Michael Pesce, Utsav Shrestha and Amandeep Goyal, “Palliative Sedation in Patients with Terminal Illness,” National Center for Biotechnology Information (January 2024). https://www.ncbi.nlm.nih.gov/books/NBK470545/. It is also discussed under the expression “terminal sedation” in Connor, Hospice and Palliative Care, 157–159, 162–163.

Connor, Hospice and Palliative Care, 161.

Gordon H. Cook, Jr. is the pastor of Living Hope (formerly Merrymeeting Bay) Presbyterian Church (OPC) in Brunswick, Maine. He is the retired coordinator of the Pastoral Care (Chaplain) program for Mid Coast Hospital and a retired chaplain for hospice care with CHANS Home Health in Brunswick.