Silent
Silent provides the tools for seekers to recognize their path and enables self-reliance for spiritual and magickal growth.
Seekers gain insight from his work and find their inner calm from his ability to listen and help others reflect.
Stages of Care at the End of Life
Silent • June 30, 2024
Five Stages of Palliative Care
Navigating the Shadows:
Recently, a friend and colleague shared the end-of-life journey for his mother. She had been ill for some time. The family had reconciled itself that the end of days was nearing. However, the grief and frustration they experienced were magnified by the hospital staff's lack of communication regarding hospice care.
Death education for the dying and the circle of care around them is the most critical portion of end-of-life. Without understanding that their mother would not be returning, the support and comfort that hospice provides, the family was caught unawares, feeling abandoned in their darkest hours. A few days after entering hospice, their mother became an ancestor.
The unpreparedness deepened their sorrow. The absence of guidance and the stark reality of an impending loss without a plan intensified their anguish, reminding us all of the critical importance of compassionate and thorough end-of-life care discussions.
As a doula, providing education is equal to other parts of care.
Hospice vs. Palliative Care
While both hospice and palliative care share the goal of providing comfort and support, they differ in their approaches and timing:
Hospice Care: Hospice care is reserved for those in the final months of life, typically when curative treatments are no longer pursued, and the focus shifts entirely to comfort care. It involves a team-based approach to providing comprehensive support to patients and their families, ensuring a dignified and peaceful end-of-life experience. Hospice care is often provided in the patient's home but can also occur in hospice centers, hospitals, or nursing homes.
Palliative Care: Palliative care, on the other hand, is appropriate at any stage of a severe illness and can be provided alongside curative treatments. It focuses on relieving symptoms and improving quality of life from diagnosis onward. This broader scope allows for integrating palliative care in various healthcare settings, from hospitals to outpatient clinics.
Stages of Care at the End of Life
The journey through palliative care is a profound and transformative experience, both for the individual facing a life-limiting illness and for their loved ones. Palliative care is a holistic approach that seeks to improve the quality of life for patients and their families by addressing the physical, emotional, spiritual, and social needs associated with severe illness. Here, we delve into the five stages of palliative care, reflecting on the profound intersections of spirituality, life, and death.
Initial Assessment and Care Planning: The first stage involves a comprehensive assessment of the patient's physical symptoms, psychological state, social circumstances, and spiritual needs. A tailored care plan is developed when collaborating with the patient, their family, and the palliative care team. This plan addresses pain and symptom management, psychological support, social services, and spiritual care. This stage is critical in establishing trust and understanding the patient's values and goals.
Active Treatment and Symptom Management: At this stage, the focus is on managing pain and other distressing symptoms such as nausea, breathlessness, and fatigue. The palliative care team employs various medical and non-medical interventions to ensure the patient remains comfortable. This stage is not about curing the illness but enhancing the quality of life and maintaining dignity.
Psychological and Emotional Support: Palliative care acknowledges the profound emotional impact of life-limiting illness on patients and their families. This stage involves providing counseling, support groups, and therapy to help cope with anxiety, depression, and the existential distress that often accompanies serious illness. The emotional well-being of caregivers is also a priority, as is recognizing the burdens they carry.
Spiritual Care: Palliative care recognizes that spirituality is a core aspect of human existence. It addresses spiritual distress and facilitates spiritual well-being. This may involve connecting patients with chaplains and spiritual advisors or facilitating personal practices such as prayer, meditation, or rituals like kispum.
In the context of kispum, this could mean helping the patient and their family perform rituals that honor their ancestors, connect with their heritage, and find spiritual solace in their traditions.
End-of-Life and Bereavement Care: The final stage focuses on preparing for the end of life and supporting the family through grief. This includes managing symptoms during the active dying process, providing emotional and spiritual support, and helping families cope with grief after the death. Bereavement care continues for months after the death, ensuring that families have the resources and support they need to navigate their loss. This is the primary focus of my work as an end-of-life doula.
Kispum and Hospice
Incorporating the kispum practice into hospice enriches the experience of honoring and connecting with ancestors. The kispum ritual, traditionally performed to offer sustenance and maintain a bond with the departed, aligns with palliative care's holistic and compassionate nature. As patients and families engage in these rituals, they can find spiritual nourishment and a sense of continuity with their heritage.
This is a time of preparation and planning.
Kispum is an ancient Mesopotamian ritual of ancestor veneration involving offerings like water or libations to honor and connect with the deceased. This practice maintains a spiritual bond, providing comfort and continuity between the living and their ancestors.
For instance, a kispum ritual could be adapted to the hospice care setting. In this ritual, seekers pour libations or offer other symbolic gifts to their ancestors, fostering a deep sense of connection and peace.
This ritual bridges the physical and spiritual realms, providing comfort and meaning during the end-of-life journey. The spiritual guidance offered by palliative care professionals can help facilitate these rituals, ensuring they are meaningful and supportive.
Final Thoughts
The five stages of end-of-life care—initial assessment, active treatment, psychological support, spiritual care, and end-of-life bereavement—form a comprehensive approach to enhancing the quality of life for those facing serious illness. When intertwined with spiritual practices like kispum, palliative care addresses physical and emotional needs. It honors the spiritual journey, creating a holistic tapestry of care that respects and uplifts the human spirit.
ABOUT THE AUTHOR
Walk into any forest in the Cascades and you are standing on the dead. The fir that fell forty years ago is now the nurse log feeding a row of saplings. The salmon carried uphill by an eagle became the nitrogen in the cedar's needles. Nothing in that forest is wasted, and nothing in it is afraid. We have built an entire industry on pretending we are exempt from this. We drain the body of its blood, fill it with preservatives, seal it in lacquered hardwood, and lower it into a concrete vault—as if the earth were a contamination to be defended against rather than the place we came from. Cremation, for all its simplicity, burns fossil fuel and sends the body skyward as carbon. There is another way, and it began here in Washington. Human composting—the law calls it natural organic reduction—was legalized in this state in 2019, the first in the nation. The process is unhurried and honest. The body, unembalmed, is laid into a steel vessel and surrounded by wood chips, alfalfa, and straw. No chemicals are added. The microbes that already live on the plant material, and on us, do the work they have always done. Over eight to twelve weeks, the body becomes soil—about a cubic yard of it, dark and alive. Families may take some home for a garden or a tree, or donate it to forest conservation land. What was a person becomes, quite literally, ground for new growth. I have sat with the dying, and I can tell you that the question underneath most deathbed fear is not what happens to me? It is did I matter, and will anything of me remain? The Hávamál answers plainly: cattle die, kin die, the self dies too—but what one leaves behind endures. We usually read that as reputation. I have come to read it more literally. A body that becomes soil leaves something behind that you can hold in your hands. Something that feeds. For those of us who keep the old ways, this is not innovation. It is restoration. Our ancestors were returned to barrows and bogs and burial mounds, given back to the land that fed them. The vessel and the alfalfa are new; the covenant is ancient. The earth gives, and the earth receives. Every harvest festival we keep is built on that exchange. It would be strange to honor the cycle all our lives and then opt out of it at the end. This choice is now legal in a dozen states and counting. If it speaks to you, say so—out loud, in writing, to the people who will one day carry out your wishes. Death plans left unspoken become burdens; death plans spoken become gifts. A leaf falls. A seed sprouts. The tree does not grieve the leaf, and the soil does not refuse the seed. When my own time comes, I intend to be useful one last time. That, too, is a kind of prayer. —Silent
For the Pagan and Contemplative Community
There is a grief that arrives before the death. It does not announce itself. It does not have a name that anyone uses at the dinner table, or in the waiting room, or in the parking lot of the care facility where you sit in your car for a few minutes before going in, gathering yourself. It lives in small moments. The first time they didn't recognize you. The day you realized you were making decisions for them that they would have hated. The night you caught yourself hoping — just for a second, just once — that it would be over soon, and then spent the next three days punishing yourself for the thought. This is called anticipatory grief. And it is real, and it is heavy, and almost no one will name it for you while you are living inside it, because you are the strong one, and the person you are losing is still here, and grief, we have been told, comes after. It doesn't always come after. Sometimes it comes alongside. Caregiving is one of the most demanding things a human being can do. It asks you to be present to someone else's diminishment, day after day, while managing your own fear and your own exhaustion and your own sadness — and while the world around you continues as though nothing unusual is happening. You go to the grocery store. You answer emails. You show up. You are praised for your strength, which is a kindness people offer because they don't know what else to give you. What you actually need is someone who will let you put the strength down for an hour. Not fix you. Not give you a plan. Not tell you that you're doing a great job, or that they couldn't do what you're doing, or that everything happens for a reason. Just someone who will sit with you in the weight of it. Who will not be frightened by what you are carrying. Who will let you say the unsayable things — the anger, the ambivalence, the love that is so tangled up with loss that you can no longer tell them apart. That is what I offer. I am a death doula and spiritual director. I work with caregivers who are in the middle of it — not at the end, not after, but now, in the long middle stretch where the grief has no official start date and the world has not yet given you permission to feel it. We meet, usually by video, for an hour at a time. I listen in a particular way — not for problems to solve, but for what is actually present beneath the exhaustion and the competence and the careful management of everyone else's emotions. You do not have to have it together when you come into this space. That is the point of it. A few things I will not do: I will not tell you how to grieve correctly. There is no correctly. I will not rush you toward acceptance or silver linings. Some things do not have silver linings, and pretending otherwise is a small violence. I will not give you more to manage. You are already managing too much. What I will do is be present — fully, unhurriedly, without an agenda — for whatever you bring into the room. If you are a caregiver and you are reading this and something in you recognized itself in these words, that recognition is an invitation. I have a small number of spaces available for caregivers who are navigating the approach of death alongside someone they love. The intake questions at tokeepsilent.me are where we begin. Or you can reach me directly. There is no script for this conversation. We simply start. — Silent