A Life Worth Ending

The era of medical miracles has created a new phase of aging, as far from living as it is from dying. A son ¢â‚¬â„¢s plea to let his mother go.

By Michael Wolff Published May 20, 2012

On the way to visit my mother one recent rainy afternoon, I stopped in, after quite some constant prodding, to see my insurance salesman. He was pressing his efforts to sell me a long-term-care policy with a pitch about how much I ¢â‚¬â„¢d save if I bought it now, before the rates were set to precipitously rise. For $5,000 per year, I ¢â‚¬â„¢d receive, when I needed it, a daily sum to cover my future nursing costs. With an annual inflation adjustment of 5 percent, I could get in my dotage (or the people caring for me would get) as much as $900 a day. My mother carries such a policy, and it pays, in 2012 dollars, $180 a day ¢â‚¬”a fair idea of where heath-care costs are going.

I am, as my insurance man pointed out, a  ¢â‚¬Å“sweet spot ¢â‚¬  candidate. Not only do I have the cash (though not enough to self-finance my decline) but a realistic view: Like so many people in our fifties ¢â‚¬”in my experience almost everybody ¢â‚¬”I have a parent in an advanced stage of terminal breakdown.

It ¢â‚¬â„¢s what my peers talk about: our parents ¢â‚¬â„¢ horror show. From the outside ¢â‚¬”at the office, restaurants, cocktail parties ¢â‚¬”we all seem perfectly secure and substantial. But in a room somewhere, hidden from view, we occupy this other, unimaginable life.

I didn ¢â‚¬â„¢t need to be schooled in the realities of long-term care: The costs for my mother, who is 86 and who, for the past eighteen months, has not been able to walk, talk, or to address her most minimal needs and, to boot, is absent a short-term memory, come in at about $17,000 a month. And while her LTC insurance hardly covers all of that, I ¢â‚¬â„¢m certainly grateful she had the foresight to carry such a policy. (Although John Hancock, the carrier, has never paid on time, and all payments involve hours of being on hold with its invariably unhelpful help-line operators ¢â‚¬”and please fax them, don ¢â‚¬â„¢t e-mail.) My three children deserve as much.

And yet, on the verge of writing the check (that is, the first LTC check), I backed up.

We make certain assumptions about the necessity of care. It ¢â‚¬â„¢s an individual and, depending on where you stand in the great health-care debate, a national responsibility. It is what ¢â‚¬â„¢s demanded of us, this extraordinary effort. For my mother, my siblings and I do what we are supposed to do. My children, I don ¢â‚¬â„¢t doubt, will do the same.

And yet, I will tell you, what I feel most intensely when I sit by my mother ¢â‚¬â„¢s bed is a crushing sense of guilt for keeping her alive. Who can accept such suffering ¢â‚¬”who can so conscientiously facilitate it?

 ¢â‚¬Å“Why do we want to cure cancer? Why do we want everybody to stop smoking? For this? ¢â‚¬  wailed a friend of mine with two long-ailing and yet tenacious in-laws.

In 1990, there were slightly more than 3 million Americans over the age of 85. Now there are almost 6 million. By 2050 there will be 19 million ¢â‚¬”approaching 5 percent of the population. There are various ways to look at this. If you are responsible for governmental budgets, it ¢â‚¬â„¢s a knotty policy issue. If you are in marketing, it suggests new opportunities (and not just Depends). If you are my age, it seems amazingly optimistic. Age is one of the great modern adventures, a technological marvel ¢â‚¬”we ¢â‚¬â„¢re given several more youthful-ish decades if we take care of ourselves. Almost nobody, at least openly, sees this for its ultimate, dismaying, unintended consequence: By promoting longevity and technologically inhibiting death, we have created a new biological status held by an ever-growing part of the nation, a no-exit state that persists longer and longer, one that is nearly as remote from life as death, but which, unlike death, requires vast service, indentured servitude really, and resources.

This is not anomalous; this is the norm.

The traditional exits, of a sudden heart attack, of dying in one ¢â‚¬â„¢s sleep, of unreasonably dropping dead in the street, of even a terminal illness, are now exotic ways of going. The longer you live the longer it will take to die. The better you have lived the worse you may die. The healthier you are ¢â‚¬”through careful diet, diligent exercise, and attentive medical scrutiny ¢â‚¬”the harder it is to die. Part of the advance in life expectancy is that we have technologically inhibited the ultimate event. We have fought natural causes to almost a draw. If you eliminate smokers, drinkers, other substance abusers, the obese, and the fatally ill, you are left with a rapidly growing demographic segment peculiarly resistant to death ¢â‚¬â„¢s appointment ¢â‚¬”though far, far, far from healthy.

Sometimes we comb my mother ¢â‚¬â„¢s hair in silly dos, or photograph her in funny hats ¢â‚¬”a gallows but helpful humor: Contrary to the comedian ¢â‚¬â„¢s maxim, comedy is easy, dying hard. Better plan on two years minimum, my insurance agent says, of this stub period of life ¢â‚¬”and possibly much more.

More…   http://nymag.com/news/features/parent-health-care-2012-5/

~~

Comments on this from Facebook friends (anonymised):

* What price ‘life’? What price ‘dignity’?

I’ve talked this over with my mother (my father died of a heart attack some 8 years ago, for which we were all thankfull). Her response: “Don’t let me linger if there is no quality of life. I want quality not quantity. We don’t let ‘animals’ suffer – why should this human ‘animal’ suffer? Why should I be a burden to you, your family, your sister, or society?”

* … and yet we tell people with depression who want to commit suicide that they are selfish for wanting to end their pain … why is that i would like to know …? i saw an ad the other day for voluntary euthanasia that talked about someone having the courage to die .. and yet people with depression who want to die are condemned as cowards. in the one breath society tells people with depression “it’s ok, we understand, a mental illness should be treated like a physical illness” and yet in the area of euthanasia/suicide, we do in fact treat people with mental illness very differently. they are not allowed to want to die with dignity but instead are condemned to a lifetime of living in pain. something worth thinking about

* In the last Federal Budget, it was announced from mid 2104 self funded retirees must pay the first $10,000 each year for all the help they receive to stay in their own home. This is a huge issue for us.

* With medical science now, they can prolong death, not life. This is why Advanced Health Directives are so imp.

* I tried to opt for suicide, but was convinced that for the sake of those who loved me, I should try to hang in there. Ending my pain versus creating much pain and stigma for family and friends. I started to realise that there was a life worth living, even with chronic depression.

* so why is that not a test we impose for people with cancer who want to die? why is it ok for them to hurt their loved ones but not people with depression? what is the difference i want to know!

* if I had a ‘terminal’, or another illness which meant I was totally dependant on others to even ‘wipe my bum’, then I would prefer to die with dignity. Yes, it causes pain, but less pain than the infliction of years of unacknowledged sacrifice by my family. Depression only robs my loved ones of some of me, not all of me. ‘Terminal illness’ can rob them of me long before I die.

* But some illnesses are not terminal like Multiple Sclerosis. There aren’t any easy answers in all this. We face this every day.

* i’m not arguing about whether people with a terminal physical illness should be allowed to die with dignity.. my issue is with why people with a terminal mental depressive illness are not permitted by society to die with dignity too. families sacrifice and suffer for people with depression… families are robbed of “me” long before i die if i have a mental depressive illness. that’s a burden to them.

* I guess my line in the sand is ‘dignity’. If I cannot clean, feed and dress myself, then I wouldn’t want to live. As long as I can, I hope for freedom from depression and other diseases, and the ongoing love and support of my friends – those who I physically reach out to when I’m down and those who support me through Facebook. (and to all those who do support me and others in such ways, I thank God for you and your love)

* you make a good point when you mention “hope for freedom from depression”…i guess that is a point of difference

* In my experience the situation is not quite as bad in Australia, particularly in rural areas. The doctors I have dealt with were much more likely to be upfront and more willing to suggest less treatment rather than more. It is now well accepted that operating on an 85 year old is almost guaranteed to lead to severe dementia so will only be done if the family demands it.

Otherwise though the article was a good description of what happens. If you haven ´t been through it yet, I suggest you prepare. Read what you can and be ready to question everything the doctors tell you, and get the nurses to tell you what they think too on the side.

I only hope that by the time I end up like this, euthanasia will be an accepted option.

* I have worked with this for all the time I have been a nurse. The patients end up in the weird situation of needing a doctor’s permission to die. Meanwhile I have to give them medication to maintain the bodily functions that get defined as life. Meanwhile my dog has more rights than I do. If I was to keep my dog alive like we do some nursing home patients, the RSPCA would seize the dog and take me to court for cruelty.

* I always swore when I was 80 I would take up some crazy human rights issue that’s bound to get me killed. If I’m not allowed to die in Australia then Goddamit I’ll die in africa with a weapon in my hands fighting to protect children or innocents from a violent regime.

There are better ways to imagine death, more honourable ways to pass, then a few pills in a sterile bubble.

IMO: If we are not, at some time willing, even able, to die for what we lived for, then we are never truly free, intentional souls.

ps. I’m 31 this year and my conviction towards the above increases with every year

* I just hope I have my wits about me enough to buy a ticket to some place where there are still decent causes to die fighting for. Maybe I’ll have to bring that forward to 75?

*   I read a Tom Winton story in which an elderly woman with terminal cancer was doing the ‘grey nomad’ tour of outback Australia with her husband. They had decided to enjoy it while they could, but when things got too bad, they’d do a “Thelma and Louise” to end it all. He didn’t want to live on without her. This raises new questions.

* also, I have seen the situation where the cost to family is ridiculous; a patient kept alive on a ventilator is visited for several hours each day by her husband, meanwhile with him working full time and visiting her, the children are effectively deprived of both parents, or another, a grandmother rearing her grandchildren is visiting for hours each day with under school age kids to spend time to her husband … a nursing home is no place to raise kids

* I wouldn’t like to see euthanasia become such an accepted ‘solution’ that the governments restricted access to essential (expensive) painkilling medication because there was an alternative….

* I don’t tell people with depression that it is wrong or cowardly to end their lives. I think the question has a couple of dimensions. 1. Do they do anything that creates the depression – if so there may be something they can do to alleviate it. 2. Drugs are one of God’s good gifts and are worth trying. If they don’t work then it is back to 1. People have the right to decide when to die.

* Do people have the right? Try visiting a nursing home and see if that is true. Most of the occupants don ´t have the ability to take any sort of decision for themselves. It is up to the family to take every decision – whether they take medication, eat, drink, shower, even breathe if they are on a ventilator. It puts enormous pressure on the family. Can you decide to kill a parent? Or will you let modern medicine keep them alive long after they should have died? Its a question most will have to face at some time.

* Perhaps I should answer my question myself. What you should do is discuss the issue with elderly parents while they can still decide for themselves. The question is  ¨Would you want to be resuscitated if you have a serious condition and would end up seriously disabled? ¨ Personally, the answer is no, as it was for both my parents. Then all decisions come down to keeping the person as free of pain as possible while they die. Medical staff are usually ok with this but sometimes need reminding.

* I worked in a nursing home for a year. The usual signal was the patient refusing food and drink. At this point the family was informed. It will be an interesting conversation with my parents (they are both 87). Both have mild early stage dementia. To answer your question: I suppose I don’t absolutely know because I have never done it. I think at the time I will be able to kill my parent(s) if it is up to me.

* whos to say that a person has no quality of life, because we judge it from the perspective of what we think and feel, people can still connect in meaningful ways even when they have end stage dementia. Disease and aging are natural phenomena its how we react to them that matters. Each person is totally different and until you are actually in the situation you have no idea of what you would do.

* In the end if its our time no matter what medicine is given we will go, I firmly believe in free will and that we choose our time and this is after 35 years as a registered nurse with 17 years experience in a aged care facility.

* you are still you, your family are not robbed of you, you are still there as long as you have breath in your physical body, I have asthma and tinnitus and other chronic conditions that I have for life but I don’t say I’m not me, I’m just me with chronic health conditions that I have to manage to the best of my ability. I have had times when my mental health was in crisis but there is always help available. Have you ever considered alternate therapy?

* people even with severe end stage dementia can still make decisions they may not always be verbal ones but I can assure you they make them, the nursing staff I have the blessing to work with can interpret even small gestures.