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Photo by Harold Carey Jr.
- In the house made of dawn,
- In the house made of evening twilight,
- In the house made of dark cloud and rain
- In beauty I walk.
- With beauty before and behind me,
- With beauty below and above,
- With beauty all around me, I walk.
That’s a prayer of The Blessing Way of the Navajos, people who ground their lives in personal dignity and self-determination. But Navajos are also people who believe so tenaciously in not thinking negatively that any mention of death or dying is a strong taboo. Given the inroads of modern medicine into their often isolated communities, this leaves them vulnerable to the enormous indignities and powerlessness of “modern” ways of death, because end-of-life discussions to mitigate them fall under the taboo. How then can they maintain their dignity and reconcile mutually exclusive goals?
For the people who traditionally “walk with beauty,” a way of escape between the horns of the dilemma has appeared in the form of a poem, written in both Navajo and English, which has become a vehicle to discuss living wills and advance directives.
Ben Daitz, M.D., in an article in the New York Times, quotes bioethicist James S. Taylor: “Using the poem and open-ended questions allows nuanced and respectful solutions to this problem because it gives people the opportunity to discuss end-of-life planning impersonally. It’s a compassionate approach, and it’s in accord with the twin values that Navajos share with mainstream American culture — individual autonomy and personal dignity.”
I don’t know how many of you have read and examined and grappled with advanced directives. Probably not many. The national average in America is less than 30 percent. My husband and I have. Talk about official-ese; talk about abstract; talk about ugly language making something uglier — Advanced directives rank right up there. They begin from the point of view: here is the set procedure. Do you want to opt out? And if you don’t opt out, you’re in for it. Considering that these procedures are all about your physical person, there is nothing personal allowed for in the directives.
And yet dying is the last action we will perform in our lives: of course we want to die in dignity, perhaps even in beauty. (Our institutions tend to make this nearly impossible, perhaps because they themselves don’t believe it is possible.)
So what does it look like, the Navajo alternative, the poem that unlocks the discussion?
When that time comes,
when my last breath leaves me,
I choose to die in peace to meet Shi-dy-in — the creator.
And isn’t that what we all want? Not just the Diné, The People, but all of us? To walk in beauty until the very end, and then to die in peace —
Why can’t all of us begin from there?
Touch2Touch 
This poem is beautiful; and the point of view it expresses is beautiful as well.
For 18 months I volunteered one day a week in the local hospital, giving hand massages to critically ill people. The two wards I was assigned to were oncology, and hospice.
In my nearly 80 visits to the hospital, I saw many, many people approaching many different stages of death. Some were returning from its grasp, moving towards life; while others were sliding towards their final good night. For me, one of the most *powerful* things I learned during my time at the hospital was that the “dignity” with which someone died had less to do with their surroundings, or even with their physical body; but more with their spirit, and the love that surrounded them.
Just something to consider.
Peace.
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What a gift that was to those people, to be touched with loving attention! And a gift to you in return, I’m pretty sure.
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Absolutely. I’m confident that in many cases, I received much more than what I gave.
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This piece was beautifully written.
I loved volunteering for Hospice. They provided the type of grace and honor of letting people have more say even in the end.
Frank Sinatra “My Way” is going through my head as I finished reading this.
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Maybe the people who seem so opposed to hospice would be able to consider it in another light through a poem, or a song —
Dignity, Beauty, Self-Determination aren’t just abstractions!
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Great posting and important. Another way at looking at end of life issues —
Much to discuss on this area — but no time now. As I read the Times article I thought of a post for C2S — and then saw yours — We should try to initiate a discussion on this topic. D
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The need and the interest are there — as you can see —
But how to begin the discussion?
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Okay — more time this evening. “Modern Medicine” has robbed many dying persons of dignity and privacy — and one of the reasons is that death is a money maker for hospitals (and some physicians) — I hate to say that, but it is true. Ivan Illich speaks of the “Dance of Death” that is done around the death bed — There are statistics that demonstrate just how much is spent in the last few months of life for the elderly when “dark is right.” It boggles the mind. So how can there be dignity when it’s a business transaction?
Volunteers doing “hand massages” don’t add to the cost. And they are simply angels.
The poem, and I wish we had it in Navajo, too, is great — b/c it is simple. There’s a simple “advanced directive” called the “One Slide Project” that I placed on C2S blog ~ 2 years ago: http://cell2soul.typepad.com/cell2soul_blog/2008/11/engage-with-grace.html —
And… really, who wants to have this “clinical discussion” with strangers anyway? Shouldn’t one’s dying be a private matter, perhaps like all else we do of import? Most of us are not podium animals. The advance directives, as you intimate, are too clinical and should be as simple as a poem or one slide. Sorry for the rambling — D
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Not rambling at all, D.
Stef? Tara? Over to you? A discussion of family matters with the “family” —
All of us have done some hospice work, and Dave is a physician. Any ideas on expanding the conversation? Working the blogs?
I am very grateful to have such thoughtful and engaged readers. And maybe there are others out there lurking who have opinions and feelings about this — Maybe we can hear from you?
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Part of me agrees with all above statements wholeheartedly. And part of me knows (through watching a friend die) that sometimes, it’s the dying person that longs for just one more day, and so prolongs the inevitable [despite considerable financial and emotional cost, and against the advice of doctors]. Part of me thinks that medicine and health “care” is MUCH too clinical, impersonal, and truly void of humanity; and yet, another part of me is so grateful for all of the advances we *do* have that we simply didn’t have access to so many years ago…
It’s a complex situation, this whole “life” and “death” and “health” conundrum. But generally speaking, I do believe that simpler is nearly always better than more complicated. I adored the one-slide directive; simple, effective, and yet gets to the real heart of the matter at hand.
So, there’s my $.02. 🙂
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That’s quite a two cents worth, madam. Thank you.
I was very taken with the one-slide directive myself.
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Quality vs. quantity
It is that simple. Are we making a person hold on to a life that will offer them poor quality? I am saddened when we could ease pain for terminal patients begging for just that.
The one slide directive is a great piece. There are many conversations that could be opened from those simple questions. Thank you for bringing this to our attention.
Tara
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I worked for many years with persons with HIV/AIDS and I was a social worker in an in-patient Hospice unit on Long Island. When I was younger I worked for 14 years as a nurse aide in a local hospital (one of my favorite jobs).
A favorite experience was working as a nurse aide in a hospital unit with a very progressive charge nurse. She sent us to take courses on reflexology, guided imagery, therapeutic touch, among other interests. We celebrated holidays with our patients and entertained them. We brought in our tape players and classical or soothing music. Televisions were off and massage and music were in. We brought in flowers from our home. It was a total therapeutic experiences for staff and patients (and families). It was a joy! I often sang to patients (sometimes in their language) when meaningless talk had to give way to meaningful presence. I try to bring to my students the power they have working empathetically to change the culture of spaces such as hospitals, homes, and agencies.
I discovered that rich human life begins and ends in relationships, people to people, or “touch-to-touch.” Over many years I saw staff enter deeply into conversations with patients about their concerns as they became increasingly debilitated by illness, and death was closer on their horizon. I also saw staff who were coming out of their “head”, or the latest book they had read, not out of their relationship or connection with the person. Fortunately that was rare, and most of the staff understood their role as walking WITH the patient, following THEIR lead.
That the language of advanced directives is dehumanizing and limiting suggests the important advocacy work yet to be done. Signs of this work appear in the new interdisciplinary masters degree in “Narrative Medicine” offered by Columbia University to physicians, nurse practitioners, counselors, social workers, nurses and others. We are slowly regaining our memory of the meaning of health care which begins and ends in genuine relationships with shared power.
I often noticed that medical staff (in all of their diverse roles) were very often concerned with taking too much time, as they were always so busy. For myself, I discovered that entering into relationships and being genuine for two minutes with patients or loved ones did not trap me in endless dialogue or tasks, it actually saved time. People had needs and questions and their questions and fears were often resolved by genuine responses.
Contrary to popular belief, people do not always die as they live. Just as babies arrive on the planet in a variety of ways, some with complicated journeys, some howling all the way, some quiet and observant, people shake off their lovely shells entering into their journey in many, many ways. How then can we really accompany anyone without being in a relationship? That is critical in helping people to make decisions, and in accompanying one another into the final phase of our life on the planet.
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I remember your stories about when you were a nurse’s aide, Therese. They were profoundly moving, and always so unexpected. I got many new and long-enduring ideas from hearing those stories.
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I was with my father when he died in a hospital. He had the best of care and was sedated so the pain was at least muted but he fought death until he drew his last breath. None of us were with him while he was still cognizant so he had to share his fears with a stranger, a male nurse on the night shift. By the time we all arrived, he was comatose and unable to speak. My mother, after witnessing that, asked that she not be left to die alone in the hospital. Six years later, we had to admit her because we were told no one but a doctor was allowed to administer the amount of morphine she required to keep the pain at a “tolerable” level. While she lay in a semi-coma, we were ushered out of the room and off to our own beds as her doctor held the belief that she “would not go” until she was alone. She died an hour after we’d all gone home. To this day I still regret leaving.
I read the article and checked the One Slide approach, both of which indicate that one’s death should be a family affair at best and an individual decision where possible. Death is a personal experience, even when accomplished in a populated setting. We stripped the Native Americans of so much; even their deaths come under our system of living. That someone is trying to alleviate some of the distress of dying white is gratifying.
Everything we do seems to be so “directed” by someone else, usually with profit being the main reason, as David pointed out. Doctors and hospitals and the funeral industry own our deaths the way corporations own our lives. I’ve spoken with my children, made a living will, and appointed a durable power of attorney, but I think I will also fill out the answers to that Slide and give each of my children a copy. I have specific plans for what I’d like to have happen to my remains after I’ve changed form because it makes me feel better now to think they’ll be carried out afterwards. I wonder what I’ll think of all this when I’ve actually stopped living in this skin.
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Thanks very much, Pauline, for the important comments. I’m sure people will identify with many of the points you raise, and stories you tell. What resonates most for me is your mother’s dying, because she expressed what is my own greatest fear, that I be left to die alone. If there was ever a time to be companioned (I feel) this is it. You did your best to companion her; it is uphill work to fight establishments of all sorts.
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I think an issue for some people is holding on to “unfinished business”, or “not letting go” because of it. I also think some people need to be told it is alright to let go. Hospice is a great gift. So is honest discussion with those close to death. Forgiveness is most important for those on both sides of “the veil.”
I don’t think we die though, but live beyond physical death. It really is hard for the people who are left behind to say good-bye.
I don’t think we can decide for another when the end will be but I do think it is no good to keep the physical machine going when the spirit would let go.
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Thanks for taking the time to write, Fran. When you write that it’s especially hard for the people who are left behind to say goodbye — it makes me think of what to me is in some ways the most painful death of all. Sudden death, like a heart attack, or an accident — Not necessarily the most painful for the person who dies. The person who has a fatal heart attack may be dead in less than a minute; no prolonged suffering there. But those that person leaves behind have a terrible terrible time in their grieving, at least in my experience. It takes them much longer to even begin a healing, and sometimes they never heal at all. Why? They were cheated of a chance to say goodbye, to reconcile, to forgive —
Which to me says a great deal about the importance of the process of saying goodbye while someone is still alive.
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