Green Burial: Old Skill, New Skill (Share Skill)

This Friday I’ll be at the Skill Share Potluck in Ann Arbor talking about green burial. Interesting that we have to teach how to do this now. “Green Burial” used to be the norm but the practice went away, like home canning, home birthing and growing your own food. With green burial are we trying to re-live the old days or romanticize about how things used to be, like one reader asked? Perhaps there’s a little of that. But I think we have an imperative to heal the earth and ourselves from some of the bad habits we’ve gotten into. With technological advances, huge improvements in public health, living conditions and social awareness, there were also some not-so-good results; we have made a habit of giving over our bodies at birth and death to someone else to care for. This is an unwanted and largely unexamined and unchallenged side effect, and we are recognizing that it has huge implications for our environment, both earthly and bodily. It’s not a good thing to be so emotionally, physically, spiritually and psychologically removed from universal human occurrences like birth and death and caring for the sick. With our gains we have also lost much.

Our current burial practices, based on misinformation, fear, convenience and social trends that don’t serve us anymore, don’t make sense anymore, either to us emotionally or to the earth environmentally. This is not just a throw back to the old days for the sake of nostalgia; it’s a biological imperative. We’ve realized that so much about how we live is not sustainable and we are trying to change that. Let’s realize that the way we die and dispose of the dead is also not sustainable. Sure, burial used to be “green” and it’s attractive to a lot of people to revive old traditions, but we are adding new logic, research and reasons to new green burial practices.

Those of us who have “remembered” how to care for the dead would like to teach others. Come learn about it and share a meal at the same time! Friday, March 13, 6:30 – 8:30 at Hathaways Hideaway in downtown Ann Arbor. More info at a2reskilling.com.

Sometimes I feel like I’m swimming upstream…

…fighting the current, going against the mainstream, trying to get to the source, trying to avoid deep water. Not exactly “up a creek without a paddle,” but working hard to stay afloat.

I want to help people discuss death, face mortality, make the most of life and plan ahead. In the hospice world we often speak of this as “reaching people upstream,” before an illness reaches end-stage, before an ICU admission, before a crisis-led conversation with family members who must make a difficult decision about life-sustaining treatment. These scenarios may still happen, but they would be made easier if difficult conversations among family members had taken place sooner and more often. Other than co-facilitating Death Cafe, a little public speaking and very few family consultations about natural death care, how can I do this?

I recently asked a palliative care professional, “What are the biggest challenges you face among patients?” Her answers were about attitudes and misunderstandings:

  • I don’t need to worry about this until I’m in my 80’s.
  • My family will take care of me, they will know what to do.
  • You’re so pessimistic; I don’t want to talk about that!

And hospital palliative care team members often hear: “I wish I knew what dad wanted; I wish we had talked about this.”

My observations:

  • People complain that their doctor won’t talk to them about death.
  • Doctors complain that their patients don’t want to talk about death.

There is a huge disconnect here!

So I’m out here swimming around in the muck trying to figure out how to help us all communicate, prepare, face our mortality and work together to make the most out of our (finite) life. I keep making connections, talking to groups and individuals and students. And I keep studying. Will there be a way for me to make a living in this field? I just don’t know. Is there such a thing as a “death communication specialist”? Sounds like a medium who conducts seances! That’s not what I want to do! I want to be a medium who conducts heart to heart conversations with the living, further upstream from the ICU or hospital or hospice room, before it gets to that, which it will inevitably do for all of us. That’s where most of us end up, folks, like it or not, plan for it or not.

Any ideas? Can we talk? Will you meet me for coffee?

 

Research needed on the benefits of home funeral

Viewing the body of a loved one after death, being involved with the washing and dressing and laying out of the body, and spending time with the body in the home can bring healing, resolution and peace to the grieving family and friends. I have often observed this in five years of work with families who choose to have a “home funeral.”

Beth cared for her mother in hospice at home. After accompanying the body to the crematory on the third day, she remarked, “That was difficult, but I’m relieved. We did not just dip our toe in, we waded right through, and I feel good about it.” Jerrigrace, a seasoned “death midwife,” based on personal experience and observance of over 500 families, says

“We need all of our senses to help us integrate that a death has occurred. This is what I have learned and what I teach others. We learn of death with all the things we are taking in – our touch, the smell, the sight and our sixth sense. It’s visceral; it’s on a cellular level. All of my emotions were present during that period of washing [my friend] Carolyn’s body. There was anger too; anger that we had no time to say good-bye; sorrow that we couldn’t talk.”

June, whose mother had a home funeral for her grandfather, expressed her trepidation upon hearing of her mother’s plans and her subsequent realization after the three-day vigil that the home funeral was very helpful to her and seemed “just right.”

A great many self-help books, articles and websites have recently emerged that proclaim the benefits of caring for our own dead and teach families how to do so by creating new rituals. However, very little scholarly research has been done on the subject of the modern “home funeral” (a problematic moniker). There is little awareness that having a home funeral is possible or even legal and there is essentially no knowledge on the part of “deathworkers” on how to do it. In addition, our culture, as reflected in our funeral rituals, views the dead body as putrid and dangerous and something that must be removed from sight and handled by professionals soon after death to avoid damage to our psyche.

We need to change this! Research is needed. I plan to do this as I pursue my Master’s degree in hospice and palliative care. Funding and sponsorship for scholarly research to advance the natural death care movement is needed to change the way we do death.

Canada lifts ban on physician-assisted suicide

This morning at breakfast I was surprised to find out that my husband approves of physician-assisted suicide. It was a heated discussion; I did most of the talking (surprise). By the end, he admitted he doesn’t know enough about it to judge it. I really don’t like it because I think:

  1. People will want to end their life before they have fulfilled their “dying role.”
  2. People will want to end their life before others have fulfilled their “dying role” in it.
  3. It would be better to allow natural death at the onset of a terminal condition than to decide to prolong a life with medical technology and then decide at some point to use more technology to end that life.

In other words, I think it’s another way to medically mess up dying in a systems that’s already way too medically messed up. Perpetuated by the medical profession, we live our lives in denial that death will come. We don’t do the hard work of thinking about mortality, our own or other’s. We don’t practice caring and connection and compassion and letting go. We think there is a line between living and dying and that that line is our choice. It’s not. We are all dying. And we can’t control it. We can only control how we choose to live.

 

I choose to live in awareness (as much as possible) that each day counts and is a blessing. I hope that this means that when faced with death, I will accept it. I hope that when given medical treatment choices, I will choose only treatments that will be beneficial. I hope that when the end is near, I will go naturally, in a timely fashion, and painlessly, of course. If I have a debilitating, life-limiting condition, I hope that I will not have chosen to prolong my life with the aid of medical technology to the point where it would then be necessary to kill me with drugs. And if I have a painful condition, I hope I will be able to endure it, with the aid of compassionate and connected people taking care of me through to the natural end.

 

This will be my “dying role;” to figure out how to do that. I believe my dying role will be just as important as my living role – why would I cut short the experience of figuring out how to die when I have not shirked the role of figuring out how to live? The “unexamined life is not worth living” (Socrates); the unexamined death is not the way I want to go.

 

This will also be my loved ones’ “dying role.” They will have to figure out how to accompany me during my dying. I will not cut them off from that experience. I just pray that it is not too terrible for them. I would not ask them to do anything for me that I would not be willing to do for them. This is the crux of the matter for me. I am willing to be with someone as they are dying, whether that death is slow and excruciating and ugly, or swift, predictable and painless.

 

I have a friend who, in her mid-seventies, suffered a stroke, got an infection, and decided not to have a risky, complicated surgery with little chance for full recovery and a high chance for the need for medical care for the rest of her life. She died within a few months of the stroke. She was ready to die, not because she was depressed or unhappy, but because she had done the work to prepare for death. She had lived her life as though she had a finite amount of time to live. In fact, she had taken a local course called “Six Months to Live” based on the book A Year to Live, by Stephen Levine. She had thoroughly examined her views and spoken to many people about them, including her family. When it came time, she decided to walk the talk and live and die according to her beliefs. With the help of hospice care she had time to have closure and say goodbye and she died peacefully.

 

I know it is not the same for everyone. I know there are situations that are very different and difficult. I am so sorry for those people and I really don’t know what has led up to their wishing they could die but continuing to live. My realm of experience has been with hospice care, where people have accepted their mortality and lived fully with their condition, while not choosing life-prolonging medical treatment or machines. They have had someone to care for them, endured pain, received comfort, and died eventually, not usually neatly or tidily. What would have been different if they had chosen to die sooner? To say now, rather than later, to not wait for one more visit with a friend or distant relative, one more awkward trip to the bathroom, once more witnessing pain and sorrow in the face of their caregiver, one more asking for relief through touch or music, one more existential crisis in the middle of the night?

 

I don’t know, because I have never been in that situation. Having witnessed many hospice situations, even though some are very precarious, I do not fear hospice, for myself or for a loved one. What would lead someone to not choose that? Is the desire to have an assisted suicide due to a fear of living until the end? Is it a fear of pain? Is it a need for control? Is it a lack of resources? Is it an assumption that all the work of living is done? Or that all the work of caring is done? Is it the only way for some people? That makes me sad.

 

As for me, I want to work to help ensure palliative care, and caring people, for everyone. I want to make that more accessible. I think normalizing assisted suicide is a step in the wrong direction for our society. We have other work to do first.

 

“Canada Court Strikes Down Ban on Aiding Assisted Suicide” (NYT 2-7-15)

 

Death Cafe Can’t Change the World

Yesterday in class, during a discussion about full code/no code in the ICU, I found myself saying that Death Cafe can’t change the world.  Then everyone added, “Alone.” Death Cafe alone can’t change the world.  It provides a forum for people outside of the hospital, outside of a crisis situation, who are thinking ahead, idealistically and perhaps unrealistically, about what they would want in an ICU scene.  But in the ICU scene, they probably wouldn’t be the ones making the decision.  They would have to trust that their support person/persons would speak for them.  That would require that they would have had some prior conversation(s) with that support person about medical decision-making and what they desired.  How many of us have had those heart-to-heart conversations with our loved ones?  And how to you do that, exactly, when you are healthy?  Or just diagnosed with a life-limiting illness?  Or doing everything you can to stay alive?

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If you have figured out how to have those conversations, good for you.  Don’t think you’re done, though.  Now go talk to your extended support network and family, those who might show up at the end and have a right to voice an opinion or concern.  (More commonly, no one shows up, but lets not imagine that:)  Hopefully, we are talking way into the future here, and several people care about us.  What about talking to your health care provider?  Or insurance company?  Do they reimburse for having these conversations?  Last time I went to the doctor I took my written “Advance Directives.”  It got copied and put in my chart, but zero conversation took place.  My PCP doesn’t know what I want and didn’t ask.  To him, it’s just a piece of paper.  If I called to make an appointment to discuss “advance care planning” or “palliative care,” in the absence of a life-limiting illness, I bet I would be told that’s not possible; there is no billing code for that for a healthy person who just wants to plan ahead.  Fortunately, I fit that category now.  When my health changes (notice I said “when”), will I have a health care provider to then talk to?  Or will I have seven, all from different specialties, who don’t really know me, and are concerned with one, fragmented portion of my current health care crisis.  I’m not complaining; when I get sick and need specialists, I’m glad I have access to them.  But who will be my primary healthcare provider who can advocate for what I want?  I doubt my PCP will be around much.  But we didn’t talk about what I want anyway, back when I was healthy.

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You see the problem.  You see why we get to the ICU scene where family is saying do everything because they are emotional and can’t let go and it’s a crisis and the’ve had no sleep.  Meanwhile, the care providers don’t want to crack someone’s ribs, give injections and electric stimulation, make someone’s heart beat again, and basically feel like they are hurting someone.  I skipped a few steps in-between, but it’s not hard to fill them in.  Suddenly, (yes, it seems sudden) I’m in the ICU, a health crisis has occurred, and I’m trying to decide if I should go on dialysis, or my offspring is trying to decide if I should get put on a vent.  Or worse yet, all those things have been done because at some point we made those choices, but now, things have reached a new level of crisis.  Even if I have talked with my kids, or whoever is helping me make decisions, we didn’t talk about this particular crisis. How could we?  How could we have known it would come to this?  The medical care decisions never stop, and they are not clear-cut.  Somehow we got to this point because we wanted a little more time together.  It’s never enough.  But now, I have an infection, or arrhythmia, or some other new challenge.  I was at home playing with my great-grandkids a few days ago (notice how long I have lived:), and today we all just want to get back home and continue doing that.  But maybe this time, it won’t be able to happen.  How do we decide when the staff asks, “If her heart stops beating, what do you want us to do?”

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What can we do personally, culturally, socially, medically, spiritually, to help us all prepare for this situation?  Help me, folks.  This is a relatively new (decades old) phenomena of being able to keep choosing more treatments, including more and more finely-tuned techniques to revive someone in the ICU or ER when a major bodily system or two has finally quit working, as it inevitably will do.  Yes, we might get hit by a Mack truck, but the reality is that most of us die in the hospital, and there is the strong potential that some kind of decision to stop more and more treatments and let death happen will have to be made.  Most of us say we would like to die at home.  I know this, because I hear it all the time in Death Cafe conversations.  Death Cafe is doing a great job providing an opportunity to talk about things like this.  It normalizes conversations about death… with strangers.  It’s not enough.  We have to normalize conversations about death in our families, in our doctor’s offices, in the hospital, in our spiritual communities, in our schools, with our friends.  Strangers are easier.  Death Cafe is good practice.  But Death Cafe alone can’t change our culture.  We can, through the hard work of talking about death with our familiars.  When I get to the ICU scene myself, or with someone I love, God help me; God help us all.

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Many thanks to Atul Gawande, who’s book Being Mortal I have recently finished reading.  I have a feeling I will be reading it many times again.  Catch him on PBS’s Frontline, Tuesday, February 10, 10 pm EST.