Allow Natural Death

Betsy Palmer – RIP and thanks for the reality check

Recent announcement of Betsy Palmer’s death at age 88 shows a rare honesty as cause of death was listed as “natural causes”.

Simple wording like this could give folks the idea that we might die from getting OLD. (!?) It is indeed highly likely that the accumulation of years and years of wear and tear on our bodies will result in ….wait for it…DEATH. Don’t mean to scare anyone, but imagine the difference this awareness would make in how we spend the very last part of our lives – the part when our need for the assistance of others grows as our ability to perform the most simple of acts like walking to the bathroom declines. An acceptance of growing signs that the body is wearing out, may be our cue to put our lives in order, to allow others to show their love for us by giving some of that now needed assistance rather than angrily refusing it. When our balance is comprised and falling is becoming a real concern – we could accept the arm of support that is offered rather than brushing off the kind gesture. We could recognize that our heart’s decreasing strength of contraction is causing us to often feel cold as circulation and metabolism slows. We can accept that growing pain from arthritis is part of our bodies decline and to allow our minds to consider that death is nearing. We may even find that the symptoms of chronic conditions that we have lived with for so long are no longer kept at bay by medications. these are all Natural Causes of decline and death and no amount of drugs or treatments or denial will stop the inevitable end of our lives.

How different would today be if we accepted that death is coming closer as we become frail…and it is natural?

I hate cancer as much as the next guy BUT

When I first began to work at a particular Ivy League Med School Hospital 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 inpatient 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 Patients, but also went to rooms to deliver massage – the only massage in the building for about 10 years at that time. Each patien 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.(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 Patients – 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 Occupational Therapist 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 patient’s? Well they had CANCER so that meant they would die. 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 patient 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.