(The author is a retired death, dying and bereavement educator and speaker who resides in Lenox, New York, and is the author of three books that deal with her personal loss. She is also a coordinator with FEN Exit Guide Services. Learn more at deborahgoldenalecson.com – Jay Niver, editor)
The very first module for my medical humanities course was called “Good Death: Oxymoron or Possibility?” A good death implies a good dying time leading up to death. The question is: Can dying ever be good, or is this unacceptable given it is, after all, dying — the end of life?
Many of my students concluded after reading and viewing the required material that a good dying time and death is individual, but certainly requires dignity, pain management, and a faithfulness to treatment wishes found in Advance Directives. They came to understand that how we die is in direct relationship to how we have lived. A death-phobic and death-denying existence more often than not does not lead to a good death, and that being tethered to machines in an ICU receiving futile care that prolongs the dying process can be the result.
There are also the emotional and spiritual needs of the dying that require attention. I knew a woman who went into hospice care at home, where she was cared for by her husband and daughter. Even though she was in hospice, her family did not talk to her as if she were dying. They did not want the rare few who were allowed to visit to talk to her about death or dying. The subject was not to be brought up.
Her teenage granddaughter thought she was doing great. The family refused the input of the hospice social worker or chaplain, but allowed a nurse to check in on her. When she became agitated, she was given medication to calm her down. It was as if a shameful and dirty secret was contained in the home.
This is not a good dying time, and it went on much longer than anticipated. As far as I know, there was no service planned. It was as if her dying was no big deal, which to me means her living was no big deal as well.
When someone has a terminal diagnosis and dying is in the house, it should be acknowledged with grace and humility. The moments should be a meditation on mortality and impermanence. Gentle music should be played. Candles should be lit. Visitors bearing flowers should be welcomed into the home. The truth of things should be discussed, and the dying person should express his or her fears and concerns.
Reassurance should be given by family that it is OK for their loved-one to die and that they will be able to carry on. Sometimes, a dying person needs permission from their loved ones to die. Memories should be recalled. Apologies should be made. There should be laughter and tears. Perhaps a gathering of family and friends. Input from the dying person regarding his or her funeral service should be requested.
It is also possible to have a wake at home, bypassing the funeral industry. The deceased can be lovingly cared for by family and friends, his or her body delicately washed, then dressed and laid out. This is how it once was, before funeral homes became the norm and we hired professionals.
It is perfectly legal to not use a funeral home. A great resource for this is the National Home Funeral Alliance (NHFA). On its homepage, it is written, “The NHFA empowers families to care for their own dead by providing educational opportunities and connections to resources that promote environmentally sound and culturally nurturing death practices (http://homefuneralalliance.org/).
There is no bigger deal than the dying time and death of our loved one. What is asked of us as survivors is to bear witness, and this can only be done if the truth of what is going on is acknowledged by all. We owe this to our loved one and we owe it to ourselves.”
Excellent article…so important that people decide how and when to die and that family and friends give permission
This is a wise and helpful article for all of us. It provides clarity for family and friends at a time when clarity, kindness and compassion should be the primary consideration. How sad it must be to die in a situation where no one acknowledges what is happening right in front of them. We can and must do better. Thanks so much for these insights.
We can learn much from our Latino neighbors. With Day of the Dead festivities and “Ofrendas” honoring deceased loved ones, they demonstrate Deborah’s advice: “What is asked of us as survivors is to bear witness, and this can only be done if the truth of what is going on is acknowledged by all.”
Alecson is on point when she says that beyond control, dignity and pain management, what constitutes a good death is individual. The rest is baloney (I’m being polite here.) First, she cites a not-so-good death without telling us whether perhaps, the conditions she berates were what the dying person wanted. Then she goes on to tell us what kind of music should be played, that we ought to have candles, ought to welcome visitors with flowers . . . . (=”Memories should be recalled. Apologies should be made. There should be laughter and tears. Perhaps a gathering of family and friends. Input from the dying person regarding his or her funeral service should be requested.” So many trite prescriptions about how other people should die. What happened to respecting the wishes of the dying person? What makes Alecson think that given the opportunity, everyone would want to die her way? Far from being wise, this article is self-contradictory and sappy to boot.
Blog author Deborah Alecson replies: “Thank you for responding to my blog post. All your points are well taken. I have to admit that in all my professional and personal years of experience I have never been called ‘sappy.’ That’s a new one to consider. The wishes of the dying person I write about were not expressed because no one told him that he was, in fact, in his dying time.”