Allow Natural Death

I hate cancer as much as the next guy BUT

When I first began to work at Dartmouth Hitchcock I was hired to float between the Oncology/Hematology and General Medicine floors. It was the only way to have a set schedule – to agree to float. I loved the set schedule and I also enjoyed floating – more to learn and less involvement with any lurking politics or drama. The two units mirrored each other and were built at the same time. Separated by a large entryway to the whole inpt tower. Go right upon entrance and you are in (One West) Cancer World. Go left and you are in (One East) the unit called The Beast by insiders.
It was pretty clear that there were differences as soon as you walked through the doors. 1W was brighter and more open – less equipment stashed around the hallways. It had a small nicely decorated room with videos to watch, a library, and a massage therapist had an office too where she massaged PTs, but also went to rooms to deliver massage – the only massage in the building for about 10 years at the time. Each pt room had a DVR- and the library had a huge selection of dvd’s to choose from. There always seemed to be fewer humans around 1W – maybe because there were fewer specialties stopping by to do a consult – cancer being a more self contained disease than say diabetes that affects all systems of the body.(and the diabetics are on 1E) The fewer number of staff milling about on 1W contributed to the lower level of activity and more perceived calm on 1W.
1E /The Beast – what can I say? I later became a Nurse Manager here and I loved the Beast. We all did…sort of. It was love hate with a camaraderie born in the trenches. 1E was a unit always overflowing with needs attempting to be fulfilled because this was where elders were hospitalized …and GI PTs – meaning there was a lot of excrement – at times contained. No DVR’s in the rooms though, and no library, no endowments from wealthy benefactors for diagnoses like heart disease or end stage COPD or renal failure. No massage therapist would walk across the hall separating the two units either – apparently chronic diseases bear no benefit from massage. And in general – it just seemed more run down and dark and crowded …and sad.
Maybe the most telling difference though was the activity room. Can’t recall the actual name but it was a room that was staffed by an OT who specialized in geriatrics. It was like going into someone’s Living room with newspapers and reading materials and craft activities – no windows but ACTIVITY!!!!!!!!! How life enhancing is that! The Activity room and the programming that took place there, was closed down after two years – no more funding was available and the OT was let go from the facility. Now elderly folks could sit in their beds/rooms doing  - nothing. Nothing leads to trouble – worsening dementia, behavioral problems requiring restraints, increased experience of pain while distraction is lacking, boredom, loneliness….
What was different about 1W that required  more niceties for PT’s? Well they had CANCER so that meant they would die. So that meant they deserved more life enhancing stuff while hospitalized. Right?
So I have a hard time getting excited about Cancer. Cancer doesn’t need more services. It is already happening. LOTS. But I don’t see the Make A Wish program that fulfills the bucket lists of elders. I don’t see benefits being held to raise money  for elders who need assistance for ….well…anything. I get that folks with Cancer are young and vital and raising families but what does that make our elders – chopped liver?!
The only good thing I see is that Cancer makes people think about death. Most folks really believe that it is a death sentence but it is now a group of illnesses, like so many others with periodic treatment required as it carries the PT along that chronic disease trajectory. But we don’t identify the chronic illnesses as causes of death – we should. WE REALLY SHOULD. Because they are. More than Cancer even. It is as if when we get old, if we have dodged the cancer bullet, then we will never die. Whew. What a relief. Have you noticed the commercials for inhalers? They have little words running under the ads and one says “COPD worsens over time”. Holy shit! What does that mean? Hopefully no one notices that,  cause it could be upsetting if you think about it too much. Good thing it doesn’t say “cancer”.
So yea…speak sooner…about approaching frailty and death.

No thank you, Ira

In a long ago post here,I thanked Ira Byock for all his work to improve end of life care, but after his recent appearance on a Sixty Minutes episode highlighting the end of life planning of Brittany Maynard, I have to say no thanks for this new focus of his work. Byock continues this work in a recent article in the New York Times.

I have witnessed Dr. Byock at the bedside of terminal patients exhibiting utmost caring and impeccable clinical skills. He clearly brings love into his practice, but there is much about him that I can’t figure out. Why is he compelled to speak out against personal choice at the end of life? Why is it not enough to continue the good work of educating doctors and improving conditions for those who are dying? Why pretend that the drugs prescribed by physicians do NOT bring death nearer while alleviating suffering? Why diminish the details of the use of terminal sedation?
After 20 years on the front lines of health care, there is no possibility that the compassionate care Byock advocates will happen for any, but the privileged few who can afford to be cared for in their homes. Those who spend time in medical institutions are certain that there are fates far worse than death; the loneliness of neglect, the boredom of institutionalization, the pain of inadequate attention to basic needs, and the over use of unwanted care that prolongs the inevitable. A question for you Dr. Byock – why must you use your good name to take a paternalistic stance against Death with Dignity that will limit choices ?… choices that will also limit suffering. I just don’t get you…maybe I just don’t want to.

Not a Big Fat Liar

Facebook emailed me to tell me that fans of my page (Allow Natural Death) would like me to post something. I wondered how that could happen. I say it can’t – so that means that facebook is a big fat liar. But I don’t want to be a big fat liar. I want to do what I have said I would do for a long enough time – the book - Allowing Natural Death: A Handbook for Frail Elders and Those Who Love Them.What’s different this time? I feel ready.Things are falling nicely into place to make it happen. A couple articles for a SW compilation in End of Life Studies are on order for Mid-February. One is on The Death Cafe Movement, the other, Allow Natural Death. Fun. I’m serious. It will be fun and I look forward to it. So if the article writing is step ONE then reading all I have blogged about here is step TWO – more than 70,000 words that helped me to adjust my thinking after much time spent on the front lines of healthcare.
Is there a community out there who would like to push me along on forwarding this agenda?
INCREASING AWARENESS OF HOW WE MUST SHAPE OUR OWN END OF LIFE.
We need to wrestle control of this part of our lives back from the medical community that has robbed us of proper good-byes…and so much more.
For many years I said that this is work that will not let me go. What I saw during nearly 20 years working where we care for frail elders in our country was harmful to me. And it surely didn’t seem to be making others feel very good either. It became horrifying to me to see that we were hurting people, hourly, in our efforts to maintain “life” in order to return them to awful place to “live” out the final days,weeks, and months of their lives. People suffer. They do not choose it. It made no sense. Maybe it is possible to stop some of that.
I’m ready.
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Malcolm says, “don’t be a Big Fat Liar.”

I say, “I’ll try not to.”

Can’t stop talking about Death Cafe

My greatest joy comes from seeing how contented folks are after Death Cafe. That causes me to believe that the act of speaking on these topics has been easy and comfortable. Hopefully folks take that positivity to the next conversations they have about death. And that will fulfill my hopes that by gaining ease in speaking about death we will be able to tell our loved ones and health care providers what care we DON’T want at the end. We will be able to avoid prolonged suffering and get closer to the “good death” that 80% of Americans say they want – but that only 20% actually achieve since our end of life care is dictated by our hospitals and providers…not by us and our loved ones.

I Love Death Cafe

Talking about death makes us better. That’s why I love Death Café.

On Wednesday evening, August 13th, I gathered in the Fox Room of the Rutland Free Library with 33 other folks for Rutland’s Second Death Café.  There was no speaker – only two sponsors – Nancy Scarcello and myself. Divided between four tables – we gathered to talk about death. No binding truths were pronounced, but cake was served. According to the Death café website – Death Café’s only objective is ‘to increase awareness of death with a view to helping people make the most of their (finite) lives’.  And this is but one way that the Death Cafe experience makes us better.

When we talk about death we are able to listen and learn from the experience of others. Everyone has definitely got a story to tell and Death Cafe has a huge element of storytelling. We can confess that we have never seen someone actively dying, then listen as someone shares a firsthand experience. We can share our own history as a cancer survivor and perhaps change someone else’s mind about conventional medicine. We can hear someone talk about the trials of an aging or diseased body and wonder what we might do if (and when) we are faced with such fear and pain. We are sometimes amazed to hear the conversational tone that is taken when seemingly secret sufferings are discussed. We learn that grief has respite too. We hear anger in the tone of those who feel an entirely other way when telling their story of loss. We learn that feelings about death are so varied that our own thoughts fit comfortably alongside the others. Death Cafe provides a space for us to listen and learn about death and dying.

Death Café is a place where sorrows can be shared. And I have heard that “a sorrow shared is a sorrow halved.” While laughter can be heard at a typical Death Café there is a reason that each table has a box of tissues as a centerpiece. We can feel free to tell sad stories here; sad stories that are uncomfortably unwelcome to those outside of Death Café. They are somehow more easily revealed to strangers who bear our sadness without the hurt our own loved ones would surely feel if we revealed these same thoughts to them. It is even possible that we will discover an ease in the telling that will make it easier to repeat our death stories to loved ones.

Death Café is an opportunity for kindness. Many of us have heard it said that we should be kind to everyone we meet because we can’t know what burdens others may carry when we encounter them in our world. Death Café presents us with an opportunity to know a bit about the struggles of those who choose to share them. And it is clear that those who did so, felt supported by folks around them. Participants have reported to me that they were encouraged and comforted and felt a need to hear more from fellow humans at Death Café’s in the future.

Rutland’s Death Café #3 is happening on Wednesday, September 24th at 6 pm in The Fox Room of Rutland Free Library. For more information call 802 353 6991.luv cats stool aqua trays 041