Spiritual Palliation
From its inception, hospice has been charged with caring for more than patients' physical health. Hospice also makes caring for the spiritual needs of patients a part of its mission. This is no surprise, given the origin of hospice and the charter that Cicely Saunders set for the organization she breathed to life. Today, even in the United States, where hospice care is covered by the government healthcare welfare program, Medicare, the spiritual needs of all patients are met, whatever those may be. This is a much-needed component of end-of-life care; what stirs us spiritually more than our final transition out of this world forever to the unknown? And let's not forget that all religion and much of spirituality has something to say about what comes after this life.
When we think of the services that hospice renders to its charges, we think of medications, vitals checks, advice on eating, and everything else that constitutes medical palliative care. We may even think of volunteers who provide respite, comfort care, and other support services. Another component of hospice is considered just as important as physical needs care and volunteer services. It has been a part of hospice from the start and Cicely Saunders, the founder of the hospice movement, gave it equal footing with physical care by.
“Life has no meaning a priori… It is up to you to give it a meaning, and value is nothing but the meaning that you choose.”
Hospice is charged with caring for the spiritual needs of patients. This surprises people since hospice seems so concerned with healthcare. In fact, from a medical standpoint, patients are only being kept comfortable and no longer receiving complex therapies; they see nurses for only about 30 minutes a week. They only occasionally see a doctor. They see a social worker every couple of weeks to a month for about 30 minutes. There is very little time spent on medical care.
In contrast, volunteers and spiritual counselors spend much more time with patients. A patient can spend up to 4 hours a week with a volunteer. They can spend another couple of hours a week with a spiritual counselor, initially in the form of an interfaith chaplain. There is time to reflect on one’s life, make amends, come to peace with one's end, and lean on one's spirituality at the most critical time for spirituality. There is time for lengthy conversations with volunteers and the hospice chaplain. There is time for prolonged silences in the presence of a volunteer and with a chaplain. This is an important distinction from other healthcare. Whereas patients experience heavy focus on the physical before joining hospice, this changes the moment they opt for end-of-life care. The bulk of hospice care is spiritual, emotional, and psychological.
Cicely Saunders, the founder of the hospice movement, recognized the weight of end-of-life for everyone, a burden that can only be lifted by nonphysical means. She noticed that this essential part of life was not being addressed by medicine, and death and quality of life before death were ignored. Saunders started the hospice movement to fill this void. She recognized that there is much more to death than the physical, and she made it her mission to care for the whole person. And so, she included emotional support in the form of psychological and psychiatric counseling and spiritual support in the form of Church of England, Anglican nuns in the first hospice. Saunders maintained a vital religious aspect in her life. She felt that religion was most important as an component of end-of-life care.
“The proof that the little prince existed is that he was charming, that he laughed, and that he was looking for a sheep. If anybody wants a sheep, that is a proof that he exists.”
The religious aspect of hospice was broadened in the United States approach, perhaps reflecting our strong separation of church and state. Under the Medicare-funded hospice, every patient, regardless of religious or spiritual belief, has the opportunity to speak to an interfaith chaplain, who, if they request, will place them in contact with a faith leader from their own specific religion. If one has no preferred religious affiliation, then spirituality can be explored.
Dale, the chaplain at the hospice where I volunteer, tells me that he has found rabbis, catholic priests, and other faith leaders for patients with specific religious needs. Hospices have at least one interfaith chaplain, usually a Christian, though this is not always the case. Dale previously worked at a hospice with a rabbi on staff. The chaplain's role, regardless of their specific faith, is to help patients of any religion with their spiritual needs as they approach their death.
Unfortunately, many patients do not avail themselves of the chaplain, primarily because often patients and/or families believe that the support comes with a religious agenda, and they cannot be convinced otherwise. He estimates that only about 25% - 30% of patients are receptive to his visits. Dale tells me that often the social workers also provide informal spiritual support.
When I asked Dale to explain what he does and what he sees his primary job as, he immediately referenced Victor Frankl, an Austrian neurologist, psychiatrist, and Holocaust survivor. Frankl is most known for his work as a psychologist who invented and practiced Logotherapy, a form of existential analysis. In existential analysis, the focus is on the things we all have in common and must come to grips with, like responsibility, death, and finding meaning in life. Logotherapy aims to help those who struggle or are blocked from finding meaning, resulting in anxiety, depression, and other psychological states. The focus is not on those states but on the existential struggles and looking for meaning in life to relive those psychological states.
“Love is the only way to grasp another human being in the innermost core of his personality. No one can become fully aware of the very essence of another human being unless he loves him. By his love he is enabled to see the essential traits and features in the beloved person; and even more, he sees that which is potential in him, which is not yet actualized but yet ought to be actualized. Furthermore, by his love, the loving person enables the beloved person to actualize these potentialities. By making him aware of what he can be and of what he should become, he makes these potentialities come true.”
Frankl believed, first and foremost, that human beings are constantly searching for purpose and meaning in their lives, which he believed drives our beliefs, behaviors, and feelings. Closure, or a satisfying mental state, results from finding meaning and purpose in life and its many aspects.
Dale uses his patients' spirituality as a launch point for exploring their sense of meaning and purpose in life. It makes sense that when a person knows they are at the end of their life, there will be a last-ditch effort to find meaning. There is often a drive to find meaning and purpose in their death. Most patients have a sense of meaning in their life, but there is a strong need to reaffirm and reinforce the meaning they have made of their life.
Our spiritual beliefs and practices are deeply rooted in our understanding of our existence and what that means. Whether one is a devout Jew or Muslim, or Sikh or does not believe in religion or God, or an afterlife, these beliefs are inextricably tied to our sense of ourselves in the world. Spiritual and religious beliefs often address how we should live our lives but also contain concepts of what comes after death. Thus it follows that at our end-of-life, we will be searching intently for our meaning and purpose from the perspective of our spiritual belief system.
“If there is meaning in life at all, then there must be a meaning in suffering. Suffering is an ineradicable part of life, even as fate and death. Without suffering and death human life cannot be complete.”
Hospice chaplains spend considerable time with patients and come to know their patients more closely than most other hospice workers. Members of the hospice chaplaincy traffic in conversations that range from the banal to the moving, from superficial to soulful, from the quotidian to the uniquely personal. They must patiently create a space for their patients to express themselves as they search for meaning in their life, establish purpose in their remaining days and come to grips with their death and what they think will happen next.
Cicely Saunders, though a doctor, a nurse, and a social worker, continued investigations into and expositions on the critical role of spirituality and religion in the dying and their ability to meet death with equanimity. There is strong evidence that people with a well-developed and exercised spiritual side (religious and not) are more resilient in life and fair better psychologically in their final days. Saunders never stopped insisting that dying patients mattered and deserved purpose and meaning up to their last breath. Spirituality was a massive component of that for her.
This need for a total person approach to end-of-life care is even fully instantiated in the US Medicare regulations and requirements for hospices in the United States to receive government funding. The fact that spiritual care is given as much weight as all other comments of this care by a government that prides itself on the separation of church and state and on its pragmatic approach to everything paid for with taxpayer money is a testament to Saunders's approach and proselytization of that approach. The US is not known for its ability or willingness to care for the health of its citizens. But when it comes to end-of-life care, we can at least meet the challenge with a sturdy, well-thought-out framework.
“Oh threats of Hell and Hopes of Paradise!
One thing at least is certain - This Life flies;
One thing is certain and the rest is Lies -
The Flower that once has blown forever dies.”
As each of us approaches our end of life, if there is the opportunity for reflection and if we defeat our denial, an existential Rubicon is sure to need fording. Many people need help fording that final existential tributary. Just as we lack knowledge of what is on the other side, we know that we can never cross back over to our life. This is the last chance to find meaning in this existence and embrace a purpose in this life we are about to leave behind. Fortunately, hospice cares for every aspect of the person at the end of life. We are complex beings, both gifted and cursed to have conscious knowledge of our existence and, thus, our beginning and end.
Dale crisscrosses the SF Bay Area peninsula and Silicon Valley, visiting multiple patients daily. He rarely sits down for a leisurely lunch, usually eating quickly before his next appointment. I got him to slow down one day and speak with me over a meal. As he described to me his views on hospice chaplaincy as well as his day to day, it struck me that Dale is a person who really loves what he does. There is a calm depth to his descriptions of this work, and he confirms this when he tells me that this is a calling for him. Though the hours are long and the work is challenging, he is committed to this calling that gives him purpose and meaning. How appropriate that his mission is to help others, in their final days, to find their own meaning and purpose.
