February 13, 2020
by Redwing Keyssar, RN, Author of “Last Acts of Kindness; Lessons for the Living from the Bedsides of the Dying.”
by Raymond Carver
And did you get what
you wanted from this life, even so?
And what did you want?
To call myself beloved, to feel myself
beloved on the earth.
“Let us change the face of dying in our culture from one of fear and anxiety to one of acceptance and compassion. Inevitable as death is for all beings, let us work to create experiences that are positive, potent and transformational.”
(from “Last Acts of Kindness; Lessons for the Living from the Bedsides of the Dying.”)
We ALL will be in positions to be “end of life doulas” at some time—assisting friends and loved ones in the dying process in whatever ways we can. Our society has known for many years that there would not be enough healthcare professionals or trained homecare attendants to care for the 75 million baby boomers who will be dying over the next 20-30 years. With the “medicalization” of death and dying in the last century (meaning the 20th century), more and more people have died in hospitals or long- term care facilities, despite the fact that most people continue to state that they would prefer to die at home. In numerous studies in the past 10 years, approximately 80% of people surveyed stated their preference to die at home, yet only about 20% actually did.
In 2019, according to a study published in the New England Journal of Medicine, “for the first time since the early 20th century, more people are dying at home.” The percentage in 2017, according to this study however, was still only at 30.7%.
One of the reasons for this is that dying at home is not easy. For one thing, it requires a person to have considered their options seriously and discussed their wishes with their loved ones—something that most people have not done. According to a recent National Hospice Foundation research report, “only 24% of Americans put into writing how they want to be cared for at the end-of-life and 19%, have not thought about end-of-life care at all, while 16% have thought about it, but not told anyone their wishes.”
In order to die at home, in the peaceful way in which many of us would like to imagine our dying process, several things are needed:
- It is best to be enrolled in a Hospice program. This means you will have an interdisciplinary medical team to care for you and ensure that your pain and symptoms are well-managed. This team will visit regularly and is covered by Medicare and other insurance providers, but Hospice does NOT provide 24/7 caregivers—which is what is typically needed.
- You must discuss what matters most, so that people understand how best to care for you at a critical time in life. What really IS most important to you? Is it having your loved ones at your side, having your “affairs” in order, not being a burden to your family? We all have different priorities. An excellent way to assess this for yourself and your family is to play GO WISH—a card game that helps clarify what is important to us. http://www.gowish.org Another option is to attend a “What Matters Most” advance care planning workshop, offered monthly by the MERI Center for Education in Palliative Care at UCSF/Mt Zion. https://meri.ucsf.edu
- You must be prepared with the appropriate resources:
- Enough people who are willing and able to provide 24/7 care, with some understanding of the dying process and what is needed. This can change day to day, hour to hour.
- If you do not have family/friends who are able to provide care, then you must have the financial resources to pay for caregivers to assist the family or provide the 24/7 care. (In the San Francisco Bay Area, caregivers can cost between $20-45/hour, depending on whether or not you hire through a licensed agency or a “referral” agency or simply a “private” caregiver. There are pros and cons to each of these things that need to also be understood)
- A space that is appropriate for the level of care that you need
Most people have little training and minimal experience or understanding about what it means to “show up” at the bedside of a dying loved one. We do not learn how to provide care for the dying in school (even in nursing or medical school) and most people have some fear about “not knowing what to do” when a loved one or friend or neighbor is dying.
Last Acts of Kindness: Care and Compassion at the End of Life is a weekend workshop at Commonweal, April 3-5, 2020, (see flyer below) that will provide a step towards getting comfortable with the territory of death and dying, as well as facing our own mortality, which is key to serving others. The goal is not to take away the “mystery” of this inevitable transition in life, but to explore this unknown with open hearts and curiosity.
This workshop offering is a unique blend of information and intuition, creativity and compassion, listening, and expressing. For further details, see information following this blog.
“Love and death are the great gifts that are given to us. Mostly they are passed on unopened.” (Rilke, translated by Joan Halifax)