Dying at Home
While approximately 80% of Americans would prefer to die at home, many still spend their final days in an acute care hospital surrounded by bustle and machines. With thoughtful, well-informed planning it is possible to spend most or all of the dying process among the comforts of home.
Hospice care is provided by healthcare professionals who specialize in palliative treatment to help control symptoms and provide effective pain management. Helpful equipment such as an adjustable hospital bed may be offered to make it easier for your carers to keep you comfortable.
Early enrollment in hospice helps build strong working relationships with your hospice team which usually includes a social worker and pastoral care provider if desired. Hospice can admit you to an inpatient facility for treatment if your medical needs change, or if your family needs some respite. In almost all cases, the cost of hospice is covered by Medicare or Medicaid.
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Effective management of pain and discomfort is the key element of both palliative and hospice care.
Palliative care treats the symptoms of a serious disease even if it is not expected to prove terminal. This specialized care can include treatment intended to cure the disease.
Hospice care is only given when the disease is terminal and may not include any treatment intended to provide a cure.
While palliative care can begin at any time, enrollment in hospice enrollment can only begin with a doctor’s prognosis that the person will likely to die of their disease within six months.
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Enrolling in hospice does not shorten life expectancy, in fact there is evidence that some people live longer with hospice care.
Hospice care focuses on physical and emotional quality of life. Early enrollment allows the terminally ill person to identify important goals they wish to achieve. It may be attending a graduation, holding their first grandchild or celebrating a last holiday with family. It is not yet understood why hospice patients live longer but it may be a result of discontinuing physically and emotionally depleting treatments and instead, directing energy towards important positive experiences.
Unfortunately, many people miss out on the full benefits of hospice care because they wait too long to enroll.
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Your healthcare provider can refer you. See the NHPCO map of hospice or palliative care providers for options in your area.
The National Hospice and Palliative Care Organization advocates to enhance and expand access to care. It offers resources for patients and their families as well as healthcare professionals.
Care at Home
Members of the hospice team work busy schedules so, to be eligible for home hospice care, someone must be available to care for you between visits. This care can be provided by your family of origin or a family of your own making, or by the staff of a congregate care facility such as a nursing home.
While caring for our loved ones as they die is woven through all of human history, in our busy and socially disconnected times it might prove exhausting for just one or two carers over an extended period of time. Supplemental help may be needed.
End of Life Doulas
Similar to birth doulas who support parents during the birthing period, the end-of-life doula provides care and companionship for the dying person. Doulas do not provide medical or nursing care although they may offer some simple comfort care.
The doula provides emotional and spiritual support, and may act as an intermediary with healthcare professionals if requested. Above all, they attend with loving care, to the interests and well-being of the dying person.
Looking Ahead
The end-of-life doula helps the dying person and those around them to understand the dying process so that they can make informed choices about care and plan for the last days of life.
Where in your home would you prefer to be? What are the sights and sounds around you? Would you like the room to be to filled with friends and relatives or would you prefer quiet and privacy? Writing down your wishes can bring clarity and reduce stress during the final hours.
Looking Back
Every life touches lives around it and leaves the world changed. For the dying person and those who love them, looking back over the lifetime of memories can be deeply healing. Life review presents opportunities to recognize achievements, reaffirm important relationships, and perhaps heal old wounds.
Using this biographical work, the end-of-life doula can help to create a keepsake as a reminder for loved ones and future generations.
Final Hours
When the dying person enters the phase known as active dying, the end-of-life doula helps to implement the plan and final wishes of the dying person. These may include music, readings, gentle touch or guided visualization.
The doula may hold space for rituals that help to bring comfort and closure at the time of death or during the days and weeks that follow.
Find a Doula
End-of-life doulas typically work independently or in small practices. There is currently no national accreditation for doula training programs and no state or federal regulation of who may call themselves an end-of-life doula. This specialist field is professionalizing rapidly however, and some training entities have been doing this work for decades. There are several trainings that offer certification or a badge of proficiency following the completion of written course work and /or peer reviewed practicums.
Your healthcare team or friends and colleagues may be able to recommend an end-of-life doula in your area. The non-profit organizations below offer directories by state and may be useful as you begin your search.
International End of Life Doula Association
National End-of-Life Doula Alliance
Disclaimers: These links are provided as a convenience and the organizations and practitioners represented are not necessarily endorsed by Morternity LLC. Beth Riungu is a member of INELDA.
“With help, the human soul has the innate capacity to make what ever journey (even end of life) it needs to.”
— Alex Tyree
Pastoral Chaplain and Bereavement Counselor