Presidential Candidates Ignoring Their Age Peers
INTERESTING STUFF – 2 April 2016

A Good Death

For most of my life, talking about death and dying has been taboo.

Death has always been scary. For centuries, humans have tried to mitigate that fear with ghost stories, with goblins and skeleton costumes on Halloween and the popularity of vampires in books and film, all of which have in common the possibility of some form of continued consciousness of self after death.

Just recently, the taboo against death talk has begun to loosen and it appears to me to be connected, in part, with the realization that for the foreseeable future there are going to be a whole lot more old people, in relation to the entire population, than has ever been seen on earth.

That means growing numbers who are concerned with and want to know more about how to control their deaths.

Death cafes, a bit shocking only a couple of years ago, now commonly attract people to neighborly discussions of dying without too much flinching from anyone.

My favorite mortician, Caitlin Doughty, not only keeps a popular blog titled The Order of the Good Death which demystifies all deathly things, her Ask A Mortician videos on YouTube are as much a hoot as informative.

Ms. Doughty, who is wont to say such things as, “Maybe we need to look and say, 'Wow, let's look at this beautiful, natural corpse,'” published a popular book in 2014, Smoke Gets in Your Eyes and Other Lessons from the Crematory that is fascinating, sometimes morbid and funny too.

I credit her continued efforts to explain the history, facts and details of dying and its aftermath with going a long way toward removing our taboo about speaking of death.

This all came to mind a few days ago when The American Journal of Geriatric Psychiatry in its April issue released a study titled Defining a Good Death (Successful Dying).

(My first thought was what in the world such an awful phrase as “successful dying” means. As opposed to what – unsuccessful dying? And what would that mean - sitting up after being pronounced dead and saying, “Sorry, just kidding”?)

Back to the report, the study is actually a review of 36 previous studies. Stakeholders in these studies included patients, family members and healthcare providers. Eleven core themes of good death were identified by the researchers:

preferences for a specific dying process
pain-free status
religiosity/spirituality
emotional well-being
life completion
treatment preferences
dignity
family
quality of life
relationship with the health care provider
other

A couple of these themes are obvious but how some of the others play into a “good death” is hard to know because I am working from the abstract and not from the study itself which is behind an expensive firewall.

The newswise website report tells us that lead researcher, Dilip Jeste, said the bottom line of their study is “ask the patient.”

(I understand that death is a touchy issue but I think I must be allowed to insert my response here: “Duh.” Jeste continues:

“Usually, patients know what they want or need and there is relief in talking about it. It gives them a sense of control.

“I hope these findings spur greater conversation across the spectrum. It may be possible to develop formal rating scales and protocols that will prompt greater discussion and better outcomes. You can make it possible to have a good death by talking about it sometime before.”

The doctor's heart seems to be in the right place but “formal rating scales and protocols” hardly sound like the care and thoughtfulness anyone wants when working out end-of-life issues.

And there already are at least two good services to help ease that conversation with family, physicians and other caregivers: The Conversation Project and Prepare For Your Care.

Over the next couple of months, I'll be discussing some practical information about end-of-life decisions that can help any of us to have a “good death” but anyone as old as most of us at this blog knows perfectly well how much can go wrong as the end approaches.

One kind of control is physician-assisted suicide. Four states currently allow what is also called “death with dignity” under very strict rules and California, later this year, is likely to join Oregon, Washington, Vermont and Montana with such a law.

Many people oppose this kind of legal suicide as a slippery slope that can lead to pressure on people, the old in particular, I suppose, to hurry along their journey to whatever comes next.

Recently, a TGB reader emailed to tell me of attending a talk at a senior center by a state employee who first discussed the importance of such end-of-life documents as advance directives and then, apparently, described in some detail the experience of dying by physician-assisted suicide.

Further, the speaker implied, according to the reader email, this is to the good because such a death would save the state money. Dear god. Has the id of Donald Trump already devolved onto the petty bureaucracy of state government?

Unlike the person who wrote to me, I welcome death with dignity laws and I even think the rules are too strict (a good conversation to have here another time). But the idea that anyone would suggest that a person end his/her life to save the government some money is disgusting and dangerous. Worse so coming from a state employee.

I'm not sure this incident actually goes well with the main discussion above about what are successful or unsuccessful deaths, but it's a good lead-in to a clip from the 1973 science fiction movie, Soylent Green I've been wanting to show you for awhile.

You remember that movie, don't you? It became notorious for what soylent green is revealed at the end to be. If you don't know, go find the movie or read the Wikipedia entry. I wouldn't want to be the spoiler.

The clip was sent to me by my blog/internet friend, John Michael Spinelli, a long-time independent reporter in Ohio who also contributes to the Plunderbund political blog that focuses on Ohio and national politics (hint: he knows a lot about John Kasich some of which you can read here).

John and I had been emailing about death with dignity laws when he included a link to this Soylent Green clip titled, “Levi Goes Home,” in which Edward G. Robinson (in his last film role) goes, as John explained in his email, “to the futuristic service center that caters to people ready to say goodbye.”

There are a lot of links above to a variety of websites about death and dying and end of life issues that I hope you will find useful or worth your time in other ways. And I know we are all eager to read what you have to say in the comments about good and bad deaths, physician-assisted suicide and related issues.

Comments

At our city hospital, we have an agency called Hospice, which is known to provide information and comfort to family members who have a loved one in the process of dying. It is run by some staff and many volunteers, and is highly regarded as an emotional support. People who work there are generally regarded as "saints", since it is recognized that assisting the dying and their families is a difficult thing to do. For many of us who are growing older, end of life issues consist mostly of making sure wills and financial matters are handled, and power of attorney is in place. I don't know anyone among my family or friends who actually talks about dying, or making arrangements to ease the process. I know it's a discussion worth having!

Your mention of mortician Cailtin Daughty reminded me of a tour I signed up for last year through the senior hall and was billed as "Behind the Scenes" at a funeral home. We had fifty people on the bus and once we got to the place we were broken up into three groups for tours and talks in various rooms where preparing the body and cremation was described in detail. (Rooms as clean and well equipped as operating rooms in hospitals.) We had lunch at the funeral home after the tours and could ask any question. It was fascinating and I gained a lot more respect for the work these people do and why it costs so much. It was also not depressing as one might think....a lot of dark humor in our questions. Afterwards a lot of us reported that younger people/family, however, thought we were crazy to sign up for that tour. Their reactions were along the lines of, "Oh Yuck!" People are afraid to talk about death in this country.

I can accurately report, as one who is surrounded by old folks all day here at the ALF, practically nobody here is afraid to talk about death. Living with death on a regular basis (at least 2 residents die here every month) takes much of the mystery and fear out of the equation.
While there are diverse attitudes concerning the after life, burials vs cremation etc., the one thing that practically every person agrees on is that they don't want to be kept alive by artificial means. "Pull the plug, and if I can't make it on my own, so be it."

I agree that, as you said, Ronni: "...the idea that anyone would suggest that a person end his/her life to save the government some money is disgusting and dangerous."

However, we all know that there's such a thing as subtle psychological pressure. A dysfunctional family might well apply some of that. After all, we all know that elder abuse happens. Plus, I have known some very selfless, self-effacing old people who might well have hastened their own ends if it was very easy and painless to do and they thought they were being a burden on loved ones.

So although I would like to be able to die with dignity and I think others should be able to do likewise, I think it may be advisable to leave a few hurdles in place.

Well said, Bruce.

I hope folks will find this relevant...

Just finished reading Irvin Yalom's “Creatures of a Day” concerned with ageing and mortality. Here is what he says on the last page of the book:'


“As I approached my eighty-second birthday, full of life and passion and curiosity but saddened by the loss of so many people I had known and loved, at times mourning my lost youth, and distracted by my deteriorating scaffolding, my obstinate, creaking joints, my fading hearing and vision, and ever aware of the deepening dusk and relentless approach of the final darkness, I opened the Meditations*, scanned the pages, and found the message meant for me:

Pass, then, through this little space of time in
harmony with nature and end thy journey in
contentment, just as an olive falls off
when it is ripe, blessing nature who produced it,
and thanking the tree on which it grew. “

*Marcus Aurelius.

For my household it is an especially rich time for the discussion, as my husband's mother died on March 6, three months shy of ninety-nine. She had wanted to go for many years. It is hard to be one of the last members of your generation of your family and your high school class in a small town, especially when you are shy and don't easily make friends.

My rant is related to what happens to the elderly that contributes to their fragility and even dementia before death. Every major decline my beloved mother-in-law experienced in the decade before her death was due to medical treatment.

At age 88 she started bleeding from uterine cancer. That was the day the doctor told her to stop taking HRT, which she'd been of for over three decades. The cause of that uterine cancer is exposure to estrogen. The months after her hysterectomy, she began to visibly shrink and age. She had been, up until then, robust, active and generally clear-minded.

After her surgery, little things started to occur which always seemed to result in a new prescription. Pretty soon she was falling regularly and starting to act childish. Eventually we realized how often she was falling. After one last trip to the ER we were told she had to go to a nursing home for rehab. The staff assigned her a roommate with severe dementia, who was hooked up such that every time she got out of bed without assistance a loud alarm went off. This happened several times per night. After two nights with her sleep interrupted every hour or so, on the third night it happened my MIL pitched a holy fit. Her rebellion became a medical diagnosis of psychosis, and she was prescribed a drug that carries a black box warning against giving it to the elderly who have vascular dementia. Fortunately, we had been called, refused to allow them to administer the drug, and removed her to an assisted living facility.

We took her to a different doctor, who reviewed her meds, cut out half of them, and lowered the doses of the remaining drugs. She stopped falling. Her mental clarity did not return.

After a few years in assisted living, with no falling except sliding out of bed when she forgot to reach for her walker (she never broke a bone), she developed some bruising. We were confident it was not from abuse, and her doc prescribed...prednisone. Within two weeks, this proud woman who still, in her nineties, put on tasteful makeup every day and had her hair waved monthly, was wandering around the hallways with urine-soaked trousers sagging around her thighs, unable to find her way back to her room.

We googled "prednisone and the elderly" and found dire warnings. My husband got her back to the doc, she was almost in a walking coma by this time, and suggested the prednisone was the problem. My husband said the look on the doc's face made it clear that he suddenly realized what he had done. He had treated a symptom, not the patient. (And yes, the bruising cleared up, but would internal bleeding have been a bad way to go?)

It took over a month to wean her off the prednisone, and while she bounced back somewhat, it was not to the level she had been at before. She lost interest in eating and her weight dropped steadily.

We put her into hospice care. They took her off all remaining prescriptions. She again got somewhat better. Not great. But she graduated from hospice alive. The weight loss slowed. She enjoyed looking at pictures and nature books my husband brought. She liked her candies and loved to reminisce. She questioned why her life was continuing, but other than that she was determined to smile at everyone and hoped to help them find a smile. She lived for ten more months after leaving hospice. By then she was so fragile we didn't understand how a body could survive. Her parents and grandparents had also lived to old age, one grandfather to well over 100, and at the end of his days he could still walk around town. I think she survived the medical mistreatment because of her basic strong constitution. None of her elders were medicated.

Several persons I've told about the falling/drugs/dementia/psychosis story has come back to me with a similar tale about their own parents. Because of our story, when they saw it happening to their loved ones they took them to neurologists, who in every case removed drugs and cut doses. Voila, no more psychosis. Reduced dementia symptoms. Less falling.

I know this is not always the case, but I think the way elders are medicated is leading to the problems they face.

Rant ended.

I know you've mentioned Dr. Atul Gawande's beautifully written and humane book "Being Mortal" here, Ronni, but I mention it again. Worth reading at least once.

This is an important topic.

Bruce, I also observe, up close and personal, what happens to seniors in the independent living building where I volunteer.

Granted, I work once a week, however, some residents suddenly forget to show up for lunch, or wonder where their purse is.

One of my favourite male residents has two hearing aids, his best friend is his senior cat. Mister Blue is very depressed, lives alone, misses his deceased wife. He cries, has called the police two or three times accusing someone of stealing his wallet. The cops arrive, look around, there is his wallet right beside his bed.

In other words, Mister Blue is beginning to lose it. He can't handle himself any more, and yesterday I overheard him say "they put two pieces of paper in front of me and I had to sign, because I can't live here any more. It's an independent living apartment building.

Can you imagine this? Mister Blue has to look for another place to live. I don't know if he has children or not, or even what his next step will be.

Every month or so, someone dies, or is judged by the administration to be unable to care for themselves, meaning, they have to move out.

Safety reasons. I get it. But it's difficult to see the sadness on the faces of those who have to move.

The wealthy ones go to assisted living. Some go to the hospital and then a nursing home. One woman I served one week, was missing the next week. I asked where she was. "She died in bed."

What the heck?

It's like being on a life raft, where every now and then a huge storm comes up, and one or two passengers fall off, are shoved off, jump off, or cling onto the side rails with every ounce of courage.

My friend and her family are preparing for a birthday party. Her mother will be 100 in May.

It sure is a good idea to at least know what our options are, relating to life and death before it's too late to decide for yourself.

Some seniors are so pumped up with medication, they don't know where they are or how to control their situations. By then, it's too late to have a say about anything.

How is an elder and her family supposed to be aware of all the medications and their side effects? How can she/they trust the doctor or a medical staff when there is very little help out there? It makes the future very scary.

Elizabeth, drugs will kill you. I refuse almost all of the drugs offered to me and my own internist knows what she can prescribe and only at the smallest amounts. Even she gets it wrong, though, like my spell with shingles last week. Too much pain killer and too much antiviral. I'm now getting back to my old pre-drugged self.

All good comments - thanks Pamela (Lady Luz) for mentioning Dr. Yalom's latest...I have several of his books and will get this one. Although I seldom buy books, his are worth re-reading.

My husband's aunt also got psychosis from being over medicated when she had to go to a nursing home to recover from hip surgery. She got better, was still a sharp lady at 96 and was discharged to her own house where her daughter hired various care takers to come in to help out until she died still able to walk around her orchard and garden. I hope I am so lucky.

Drugs... can't trust 'em, but sometimes you need 'em!

@dkzody: I just had a bout with shingles last week too. Ow, right? Mine made its appearance first thing on a Saturday morning, so I was more or less on my own figuring out whether it ought to wait until my doctor would be in his office. I didn't know anything about shingles beyond ooh I hear it's nasty hope I don't get it. Thank goodness for the internet and google images! I was pretty glad I went to the emergency department in time to get the antiviral within the 48-hour window when it supposedly does some good.

My doctor says aggressive pain management at the time of the outbreak seems to reduce the chances of lasting post-attack pain. I've been willing to go along with that to a certain extent, even if it does fog my mind. (I've been doing a lot of sleeping which I figure is good for me when I'm ill.) Every so often I let the pain meds wear off completely to check on how much improvement there's been - I think I'm about ready to stop taking them.

Has anyone ever given any thought to how many nursing homes there are across the United States filled with elderly people on numerous medications that only make their lives miserable and certainly don't give them quality of life? We are supporting the healthcare industry by keeping people alive on medications with no quality of life. It is unethical and immoral. Nursing homes are being purchased by investment groups who immediately cut staffing and are making great profits at the expense of our elderly in their final years.

I am a retired Mortician Emeritus who worked as a staff mortician for 25 years. I have been in my fill of nursing homes. Upon retirement I worked for two different nursing homes doing risk management and quality. I will say that toward the end of my nursing home profession I saw doctors suggesting "comfort cares" to families. Many times it is the family that wants the person to live beyond all possible odds and will take anything that might mean a possible improvement.

I would like to add that as a mortician I did a lot of death education, facilitated many grief groups and always gave funeral home tours. The feedback was very positive and people felt that the tour and the education that accompanied it took the mystery out of the funeral process and created a feeling of comfort for the final days.

Because I was having a medical procedure on the day this was published I didn't comment. But I just read a quote that made me laugh on this topic and wanted to share.

Woody Allen said "I.m not afraid of death. I just don't want to be there when it happens."

I think I share his feelings.

maryellen poses an excellent question "How is an elder and her family supposed to be aware of all the medications and their side effects? How can she/they trust the doctor or a medical staff when there is very little help out there? "

My reply is a fairly simple one...Ask your doctor why you need the medication, remind your doctor of your other medications and when you get home, Google the medication online and ask your pharmacist about side effects before you get a new Rx filled.

This is especially important if going to a new doctor or if you've been referred to a specialist. Last year I was diagnosed with osteoporosis and OsteoArthritis. I have been a chronic pain patient for almost 20 years and already take opiate pain meds just to be able to function. When I asked my new Rheumatologist what she might suggest for pain, she whipped off a new Rx for more pain meds without consulting the paperwork I had filled out - paperwork that detailed my current pain meds. She prescribed a medication I'd had a bad side effect to..something else I note in my 2 page print out of surgeries and medications which I bring to every doctor for their records. "Oh" was all she said when I told her I'd taken the med and was not going to take it again. She then wrote a script for a med that caused elevated blood pressure, though I also had noted I had chronic hypertension and currently take 2 meds for that.

It is up to us to be responsible for the medications we put into out bodies.. Doctors see huge numbers of patients and don't remember what each of us take. I'm a firm believer in personal responsibility..we have the internet as a great resource to learn about medication interactions and side effects..granted there are some crackpot websites out there but there are also excellent ones that will give you exactly the information you need to be aware of.

Take care! Elle in Beaverton

I agree with Darlene and Woody. During the past year I've developed a couple of sometimes-painful conditions that have definitely had an impact on my quality of life and ability to do some of the things I need and want to do. A "massive" (per the MRI report) tear in my right rotator cuff might be repairable surgically, but surgery itself is risky and doesn't always have the desired results for older people. For now, I've chosen physical therapy and medication to deal with this issue. Residual nerve damage, scar tissue and arthritis from 3 lower back surgeries in my 20s are likely here to stay.

Yes, drugs can be bad and most have side effects, especially some of the newer, widely-promoted meds. Patients need to be aware of what drugs they're taking, dosages and what they're for--which may be difficult for very debilitated people in nursing homes and those who have dementia. That said, I don't think I'd be cheering for my own longevity if I had to live the rest of my days with a high level of unrelieved pain. I worry a little about the new FDA regulations that are intended to curb misuse. Will they also "punish" people who legitimately need certain medications in order to preserve some level of functionality and quality of life? I've developed more empathy for people in this situation over the past year and hope that common sense will prevail when interpreting the new regs.

Verify your Comment

Previewing your Comment

This is only a preview. Your comment has not yet been posted.

Working...
Your comment could not be posted. Error type:
Your comment has been posted. Post another comment

The letters and numbers you entered did not match the image. Please try again.

As a final step before posting your comment, enter the letters and numbers you see in the image below. This prevents automated programs from posting comments.

Having trouble reading this image? View an alternate.

Working...

Post a comment

Your Information

(Name and email address are required. Email address will not be displayed with the comment.)