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Last weekend, 60 Minutes had a story about the high cost of dying in a hospital. One doctor said that 30% of procedures and tests performed during a patient’s last couple of months were unnecessary. They are paid for with little question by MediCare and the doctors ordering them are mostly doing so just to cover themselves in case of lawsuit. The story included a couple of patients who were shown in the hospital: One man in his sixties was extremely ill and he wanted a liver and kidney transplant. Another woman was in a coma, hooked up to a lot of machines that were keeping her alive indefinitely. At the end of the piece, the narrator said that both of these patients had died.

The story touched a nerve with me because of the experience I had a couple years ago with my mother’s death. My mother was 92 and had experienced four or five heart attacks, beginning in her 80s. In spring of 2006, she had another heart attack, went to the hospital, then spent a many weeks in a rehab, which sent her into a deep depression. Her independent living facility refused to take her back, insisting she go to assisted living. She was extremely upset about this but we moved her. Within a week of moving into the assisted living apartment, she then had another series of problems, went back to the hospital and then for another long stretch in rehab. We then had to move her again into a nursing home. Again, within a couple weeks, she was back in the hospital — most of her systems failing. We met with hospice people and decided to move her to hospice and switch to palliative care. That meant she’d no longer take the 20 or 30 pills a day she’d been taking and she wouldn’t be on any machines.

That weekend, she went into a coma and we were told by people at the hospital to prepare ourselves for her death. Then the doctor gave her some anti-biotics and she woke up. When I went in to see her, the doctor was there, very proud of himself that he had gotten her to wake up. Meanwhile, my mother was in a living nightmare. The only things she said to me was, “How do I get out of this nightmare?” She was convinced that the nurses were trying to poison her and she refused to eat. To my amazement, the doctor then ordered a CAT scan for her, which meant they’d be dragging her down to the lab and so on. I almost choked. I questioned the need for this CAT scan (thinking, gee, do you think it’ll show that her heart is bad????). He did not respond well to being questioned and my mother was hauled downstairs for a CAT scan, which costs thousands of dollars.

Later, I had a phone conversation with this doctor and I told him we wanted to move my mother to hospice anyway. I don’t remember his exact words, but he implied that I didn’t care about my mother and just wanted her to die. We waited one more day — during which my mother was increasingly afraid and incoherent — and then we finally unplugged her from the machines, threw away the drugs and moved her to hospice.

I can hardly describe the relief I felt at the hospice. They dressed her in regular clothes instead of a hospital gown. The nurses there were completely different — I remember watching them get her settled in the bed and crying at the gentle way they handled her. Instead of Patient X, she was a human being again. Two days later, she died quietly in her sleep.

My mother was no longer cognizant by the time she got to hospice, but for the rest of us, getting her out of that hospital room and letting her die like a person (sans machines) was an enormous relief. I still deeply resent that doctor and the things he implied when I questioned his efforts to keep testing and keep drugging and keep her alive — without any regard to the quality of those extra hours he gained for her.

The moral of my story has to do with a certain mentality we suffer from in in our culture — that when your time has come, we must — to quote Dylan Thomas — “Do not go gentle into that good night. Rage, rage against the dying of the light.”

With all due respect to Mr. Thomas, an admittedly a brilliant poet, we have institutionalized this sentiment. We have the technology now to keep people alive indefinitely, to wake up the dead, to prolong the agony of the death process. Aside from the enormous cost of this, which is the real villain bankrupting our country, what is the point of buying a few more hours or days, or mindless months? When I contemplate my own death, I do not want to die in a hospital, costing hundreds of thousands, and listening to the tick and whir of machines. If at all possible, I intend to slink out into the woods somewhere with a .38 and take care of it myself.

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PatsyT
Member

Hi Escribacat,

I saw this on 60 minutes also. Heavy topic, but so important that
people talk about it in a thoughtful and caring manner, as you have done so here.

I have gone through four parents passing on, mine and my husbands.

My Parents wanted hospice and had planned it out years ahead of time.
So there was no ‘guess work’ by any one in the family.
They had it there in black and white, what a relief for everyone.
Their experience was peaceful, unpainful, respectful, comfortable and dignified.

My Husbands Parents left the decisions up to him.
His Mom had diabetes and a heart condition.
His Dad, Parkinson’s.
After seeing what they had to go thru,
I can not imagine anyone not having that, end of life care,
discussion with their doctor.
You could call what they are doing, medical torture,
but once you start down that road how do you stop?
If it is a son or daughter making the choices, imagine the guilt,
the conflict and the burden.
How far do you go?
Are they in pain?
They can’t tell you anything.
They can not give you any guidance even thought they have done that your whole life.
Now their voice is silent.
A machine makes them take in air.

I wonder if you could take a vote and asked-
When you go…..
Would you like to pass away with dignity, peace, no pain and surrounded by your loved ones?
or
Would you like to be hooked up to machines?
Tubes for feeding and liquids?
have a catheter inserted here and there?
Restrained in your bed?
Lying in waste?
Unable to communicate?
In pain?
Confused?
Afraid?
Bed Sores?
Strangers around?

I wonder how many would choose the later?

I read this earlier today and knew I needed a little time to respond.
You are very brave to put this together.
Thank You….

bito
Member

Why is health care a political question? Why is dieing with dignity such a difficult question? Why is compassion for one’s fellow man perplexing? Perhaps I know so little of purpose of life, to be so damned sure of the “after.”

javaz
Member

When it comes to euthanasia that is one of the arguments the RWs always use – death with dignity.

I’ve never understood how making a person suffer needlessly through their final days as dignified.

And when did health care become political?
I remember the good old days when a person would get sick and see their doctor and lots of times, the doctors handed out the pills from his office and a pharmacy wasn’t even needed, unless the medication was something special.
You’d pay the person at the desk and that was that.
When did it all get so expensive and complicated?
And who made it political?
Was it Reagan?

KQµårk 死神
Member

I did not realize the dastardly right was trying to co-opt that phrase but I’m not a bit surprised. I always understood the “death with dignity” movement to be associated with causes like hospice and assisted suicide.

I support the efforts groups like death with dignity.

http://www.deathwithdignity.org/

Kalima
Admin

Thank you for sharing your story escribacat, it made me sad, then made me mad as I recall my own mother’s story of too little too late. Although now more than 2 decades ago, I recall the suffering she endured for the final 6 months of her life and still feel something akin to rage when I think of her doctor being too complacent to order the necessary tests which could have saved her life.

KQµårk 死神
Member

Hey Kalima. 😉

That’s the damn truth some doctors don’t order the tests or procedures that can save a life and then when a patient is ready to go they order unnecessary tests. The worse factor in the US is that doctors make their decisions based on the level of insurance the patient has.

Kalima
Admin

I call that murder KQ.

bito
Member

Morning Kalima, looks pretty cloudy today. Suffering on one’s own with one’s decision and suffering due to someone else making the decisions is certainly a vast difference. Is respect so difficult?

Kalima
Admin

Good afternoon evening bitohistory, hope things are well with you.

We are like two ships passing in the night, I left you a link on “Morning Blog” before I turned in last night, setting your webcam to my correct location. It’s been pouring here since last night, I love the rain.

Respect seems to be a difficult emotion to obtain these days and I would never beg or demand it as someone suggested here the other day.

bito
Member

Kalima, I had that same thought this morning. I get up, stumble around, and when I turn on the laptop you are saying “Goodnight”. I do like the webcam. Adds a little personal touch on your corner. You and the hubby wave when you go to that store. 😆

Kalima
Admin

I stumble around all day, it’s my speciality.:)

Don’t get out of the house much on my own anymore, need a chaperone these days not as bad as you might think, all young kids in their 20’s who work for us. A bit of eye candy for this old broad. 🙂

bito
Member

Now, now, easy girl 🙂 I get all tingly when the nurse rubs my arm for a blood test.

Kalima
Admin

😆 You naughty boy!

KQµårk 死神
Member

Escribacat what a touching and poignant life experience that you shared with us. Modern medicine does not take into account quality of life issues nearly enough. Just being alive is not enough. I think more doctors are realizing this but the culture has not changed. At a certain point the patient should be able to refuse all procedures and if the patient is incapacitated the family should speak for the patient. I know living wills does this to some extent but doctors still do what they want in many instances. Doctors must realize this is not an intellectual decision this is a decision of the heart.

BigDogMom
Member
BigDogMom

Kqark, from taking care of my mother, the family has to be the advocate for the patient, because at times the treatment that they are going through is pretty tough on them, like chemo, and they are not able to voice their wishes.

This happen to work for my family in particular, we presented a strong, informed and united front. But after hearing this story, we were lucky in way, we had wonderful caring doctors.

Unfortunately now a days, this may not be the norm….

Suzanne525
Member
Suzanne525

Thanks for sharing your very personal story. I saw the 60 minutes program also. A year ago, my very independent 90 year old mother passed away, after a year in the nursing home. We had talked about her living will and she signed one while she was still able to. She did not want to be hooked up to machines, and luckily she didn’t have to go through that. Her quality of life was extremely poor for the last 5 to 6 months. She couldn’t stand or even sit up and talking became difficult. She was ready to go.

Yes, it was very difficult, but she had made it clear, several years ago, that when her time came, we should just let her go. She was ready. I understand when people want everything done because we don’t want to let go of them. But that is just selfishness on our part.

I’m not yet 60… and (I think) in good health, so I don’t see any terminal illness around the corner. But, hey, there could be the proverbial bus around that corner, so we never know! But already, I’m thinking about what I need to do to prepare for my own demise. Mostly, I need to clean the house and get rid of all the junk I’ve collected. Other than that, I’m not too worried about the afterlife, whatever that is.

Yes, we spend too much money trying to forestall the inevitable, rather than accepting that it absolutely will happen. I wrote something to that effect on that other site and it got deleted. Hmm.

BigDogMom
Member
BigDogMom

Suzanne, the truth always seems to get deleted over there!

Talk about cleaning house, I was the executor for both my parents and grandmother, and had to clean out both their houses to get them ready for sale. You would not believe the years of accumulation of stuff that they had. It took close to 6 mos. to go through each house and many dumpsters later, before the houses were ready to go.

Since then, I have learned that a lot of the “stuff” that we accumulate is not really necessary, you can’t take it with you, as the saying goes.

I have had at least 4 tag sales over the past 5 yrs, given things to goodwill and have stopped buying “stuff” and live a much simplier life….hopefully when my time comes it will be easier for my nieces and nephews to clean up and they won’t have to go through what I did.

bito
Member

BDM, made me chuckle. When I was exec.for my friend, she would laugh about getting rid of many of her belongings. “Why should I worry about that, I won’t have to worry about it when I’m gone. some one in the family can take care of that.” (she did end up getting most everything marked and a list written down). She had fun with that attitude though.

BigDogMom
Member
BigDogMom

I have a list for my jewelry, my neices have already put their dibs in and I’m only 51, very healthy and very active, can you believe that!

Well, who cares…it’s only for me to enjoy while I’m still on this earth…

Kalima
Admin

Good evening BDM, hope you are well?

I find that rather unbelievable about your relatives, but the I remember when my grandmother died suddenly and my grandfather was too numbed by grief to notice his surroundings. A bunch of relatives stormed their house like vultures, by the time I got there from England, I found my grandfather in another room sitting in her rocker and the demolition gang showing their true colours fighting over silverware, cystal wedding presents, anything and everything, I couldn’t find my voice, I was in total shock. When one of them started to take down the curtains to pack, I let out the loudest scream I had ever heard, retrieved what I could from their greedy hands and threw them out. Thank goodness that my grandfather seemed oblivious to their behaviour.

They had just celebrated their Golden wedding anniversary a few months before she suddenly collapsed and died.

I have not told my family members anything yet about how my things will be divided, I want it to be a surprise.

KQµårk 死神
Member

You bring up such an important point with your mother. She sounded like a wonderful woman.

I’ve had relatives “ready to go” and relatives that fought death to the bitter end. The relatives that accepted mortality always left this world more peacefully. While the two uncles I can remember the most fought their ultimate demise left the world seemingly incomplete. That taught me to make sure you have few regrets in life and accept your fate when it comes. Ironically I’ve faced that fate twice and I think because I was fine with whether I lived or died it actually helped my recovery because I had no fear.

bito
Member

KQ, Something about hearing “You have Stage IV…… here is what we can do…..” Certainly made me jell my thoughts. This being after losing both my parents to cancer. Fear, or lack of, has a large effect on ones’s attitudes.

AlphaBitch
Member
AlphaBitch

Hey there Escribacat: what a touchingly beautiful, hauntingly sad story! Right now, we are going through end of life issues with my father in law. He is in his mid-80s, had several heart attacks, went to get a quadruple bypass in August 2008, and AFTER surgery, suffered a major stroke. He can’t walk, has difficulty talking, and needs help round the clock. He got depressed, threatened suicide while in a nursing home, so his two local children moved him back home. He is now holding the entire family hostage, and their anger, frustration and depression is building like a volcano.

He tells his children that they HAVE to take care of him (never mind my sister in law has a job, a husband and two teen sons she seldom sees anymore), that it is their job because he “took care of them”. This from a man who didn’t change diapers, and when his own father fell ill, didn’t take him into his home or wipe his ass for him. (Sorry, I am angry with him as I see what has happened to the rest of the family. One brother in law is on the verge of a breakdown, my mother in law is now in a hospital and has had her hair fall out and her psoriasis worsen to the point of untreatable). Yet no one challenges him. I have backed away – it’s not MY father, after all – but inside I am seething. My husband has formed very good boundaries, but still we spend hours each night, him talking to his siblings, me talking to him afterwards to get the shorthand version.

My father in law actually said the reason he had children was so that they would take care of him! Never having had my own children – just my exchange student/refugee “children” – the concept is as foreign to me as having parents so they can pay for your tuition to college!

aaarrggghhhh! Sorry for the venting. You touched a nerve.

But now back to you: there is a great book, written by my doctor. He’s been on NPR a lot – his name is Jerald Winakur. He wrote the book “Memory Lessons” about his own father’s descent into Alzheimers, and his efforts to care and comfort his dad. His story is wonderful and made my husband cry in public when we went to the reading. Check it out, if you can.

And thanks. I love how open everyone is here to sharing. As I tell the students who have witnessed such atrocities in Afghanistan, “sometimes if you share your story, each person can take a little bit of that burden from you, and help carry it for you”. I feel better already.

javaz
Member

I am so sorry to read about the problems with your father-in-law.
I cannot imagine the helplessness, pain, guilt, frustration and anger.
Is there no one that can consult with your father-in-law’s caregivers?
I am not familiar with hospice caregivers, but from listening to others who have dealt with them and reading the stories on this thread from PPOV members, it is my understanding that hospice nurses are compassionate, caring people and maybe someone could talk to one of them for guidance.

(We are also going through something similar, but not nearly as bad with my mother-in-law. But it’s on another side of the spectrum whereby she refuses medical care for a problem and is in denial. It’s very frustrating and depressing for the family.)

AlphaBitch
Member
AlphaBitch

Hi Javaz! Thanks for the suggestions. We are working to get him some psych help. I KNOW he is frustrated and feels like he is out of control; the problem (and remember – I’m the daughter in law) is that this seems to have only been exacerbated by his situation. In other words, he had the same tendencies before the stroke; but it’s magnified by his situation.

As to your mother in law: it’s hard. I lost my parents when I was 30 and 37 (way too young to be an orphan). Both died from lung cancer. I tried to talk them into quitting smoking. What I learned is that you have a duty to speak up, but you can’t make grown-ups (especially parents) do as you ask.

I’ll keep you guys in my thoughts. Keep your spouse supported. That’s the best we can do in these in-law situations! I’m so glad I have this forum which allowed me to vent here – I want to just listen at home, and not vent.

javaz
Member

I lost my parents when younger, too, and when they were far too young, and I do have 3 older brothers, but we’re all so removed from each other and not exactly what a person would call family.
We do the obligatory exchanging of Christmas cards, and I am close to one brother, but he lives back east so we communicate mainly via email.
PPOV reminds me of a family with all the quirky and not so quirky relatives (myself included in the quirkydom!) with AdLib being the parent!
Poor AdLib!
We’re lucky that we’re here at the initial start of this marvelous site, because I have complete confidence that this site is going to take-off and take-off big and we’ll lose a little something, but gain a whole lot more when it comes to valuable members and liberal ideas!

bito
Member

Escriba, My heart goes out to you. Your story brought tears to my eyes. I lost both my parents and I was the principal caregiver for both of them. I was also their executor in their living wills. I was also executor for a good family friend (or as the family joked I was the executioner) The difference from your experience, was I had very understanding and sympathetic Doctors. In all three cases they honored their wishes.
In my fathers case he wised and chose no medical intervention immediately after the diagnoses and went into home hospice. He died 2 months later with compassion and dignity in his own bed.
My mother’s and the friend’s cases were different, but in both, the died under hospice care and I made every attempt to follow their wishes

My observations: A: is that you had asshats for doctors! B: The Hospice nurses and helpers are saints. C: Consider it an honor that you helped your mother in her time of need. D: Everyone should have a living will/ directive and a person that you trust (discuss with them your last wishes)to act as you executor.

Peace

KQµårk 死神
Member

My wife is my caregiver and angel. I’m the survivor which I think is the much easier roll in the relationship. Surviving is instinct and while I have a strong constitution, based on my doctor’s prognosis I should be long gone, it takes much more inner strength for my wife to take care of me. As I’m sure you know being caregiver means not just taking care of medical needs but taking care of everything.

Blessed be the caregivers, they are the real heroes.

javaz
Member

Aw, Bito, it takes a special person to take on the responsibility of caregiver and executor and even though it must be an honor to have been asked by a close family friend, it’s still a very hard and emotional job.

You’re a good person and a kind soul.

bito
Member

javaz, let’s not get carried away now~blush~
I just try to learn from others and attempt to understand what ground they have walked on in their lives. Perhaps not so much understand as realize the different, yet similar, lives we all lead.
To steal a line I recently, “Live your life conservatively, treat others liberally.”

BigDogMom
Member
BigDogMom

escribacat, what a wonderful post.

I find it amazing that at the number of tests conducted at the end of someones life. I understand that doctors took a hippocratic oath, but enough is enough…..they must have known that no more could be done for your Mother and for those other patients.

The doctors that we had for both my Mother and Grandmother at the end of their lives, must have been anomalies. For both, those doctors knew there was no more that they could do for them and suggested to us that hospice was the way to go. Which was such a blessing, the nurses were wonderful to the family.

We should be all allowed to have everything possible done for us medically, but when it’s time, it’s time…death with dignity should be the norm, not prolonged misery…

javaz
Member

Incredibly touching post, escribacat.
And incredibly depressing.
Thank you for sharing such a painful and personal experience.

I am sorry for the loss of your mother and the suffering she endured and the suffering you endured.

PBS did a show not very long ago about the same topic and end of life decisions and they also interviewed several people, doctors and clergy.

The most amazing thing about this show, was when the doctor talked about religion and how doctors must understand and allow for religious beliefs.
The doctor concluded at the end that it was the most religious people facing death that wished for every option in keeping them alive, no matter the odds of their survival.
Those not so religious or whatever their beliefs, were more pragmatic and chose not to resuscitate or being hooked up to machines.

http://video.pbs.org/video/1324700718/

Even though the PBS show is called – Religion and Ethics – it surprises me more times than not in showing the hypocrisy of certain religious ideology.
If you’ve never seen the show or steered clear because you may think it’s a right wing program, it’s not.
It covers the bases without opinion and leaves the viewer to decide.

http://www.pbs.org/wnet/religionandethics/episodes/october-9-2009/end-of-life-decisions/4516/

choicelady
Member

Thank you, escribacat for your amazing story. Mine is the precise opposite. In 1987-88 after several months of constant nausea and loss of weight while in the hands of buffoon doctors, my mother-in-law finally got decent care. My husband and I got her admitted to a wonderful hospital in upstate NY where she was quickly diagnosed with terminal cancer thanks to a fast and reasonably painless liver biopsy. The doc declined to do any more tests, asking what was the point of trying to determine the origin of her cancer and putting her through tests that would do nothing for her well being? Wow. When we went to the hospital, if we asked to see the doc or the resident – they CAME and told us all we needed to understand. She was sent home, we got hospice for her, and in the last two weeks she had round-the-clock care that took care of her – and of us. She died in her own bed, sweet smelling and comfortable from all the lotions, massages, and loving care she received. I will be forever grateful to the doctors and hospice nurses who gave my mother-in-law such attention and care. That hospital and all the people associated with our experience are the standard to which all medicine should aspire. It was not costly – it was quite reasonable since they minimized the testing and had no treatment of what was untreatable – combining good medical practice with humanity. We all deserve these outcomes. My mother-in-law did not rage against the dying of the light. She did not need to.

Corgi Lover
Guest

Escribacat; KevenSeven: If you upload a photo first and then go to the library to retrieve it you may have difficulties. The only way you find it is to select “unattached” and then it doesn’t always let you get to it. It is easier to first put a photo from your drive into the story, then, in a different browser window, go into the library, open up the now attached photo and find out where it is located for the preview frame. Why this is a difficulty, I don’t know, but it happens.

KevenSeven
Member

Wow, that is crazy.

I’ll try to understand it and implement it the next time I need to.

KevenSeven
Member

Jezus, how harrowing.

The fact is that 30% of all our heath care dollars are wasted. Spent on stuff that need never be done. That at end of life the number does not shoot way above 30% amazes me.

And I can never get a picture to post, either. Perhaps next time I will work in a different browser.