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No politics this time. I, like many Americans, have an elderly parent whose medical needs never seem to go away, and I worry about what might be coming down the road next. This story reminded me to pay attention to the things that are important. I hope you like it.

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A doctor discovers an important question patients should be asked
By Mitch Kaminski
March 9, 2015

This patient isn't usually mine, but today I'm covering for my partner in our family-practice office, so he has been slipped into my schedule.

Reading his chart, I have an ominous feeling that this visit won't be simple.

A tall, lanky man with an air of quiet dignity, he is 88. His legs are swollen, and merely talking makes him short of breath.

He suffers from both congestive heart failure and renal failure. It's a medical Catch-22: When one condition is treated and gets better, the other condition gets worse. His past year has been an ******* cycle of medication adjustments carried out by dueling specialists and punctuated by emergency-room visits and hospitalizations.

Hemodialysis would break the medical stalemate, but my patient flatly refuses it. Given his frail health, and the discomfort and inconvenience involved, I can't blame him.

Now his cardiologist has referred him back to us, his primary-care providers. Why send him here and not to the ER? I wonder fleetingly.

With us is his daughter, who has driven from Philadelphia, an hour away. She seems dutiful but wary, awaiting the clinical wisdom of yet another doctor.

After 30 years of practice, I know that I can't possibly solve this man's medical conundrum.

A cardiologist and a nephrologist haven't been able to help him, I reflect, so how can I? I'm a family doctor, not a magician. I can send him back to the ER, and they'll admit him to the hospital. But that will just continue the cycle. .?.?.

Still, my first instinct is to do something to improve the functioning of his heart and kidneys. I start mulling over the possibilities, knowing all the while that it's useless to try.

Then I remember a visiting palliative-care physician's words about caring for the fragile elderly: "We forget to ask patients what they want from their care. What are their goals?"

I pause, then look this frail, dignified man in the eye.

"What are your goals for your care?" I ask. "How can I help you?"

The patient's desire

My intuition tells me that he, like many patients in their 80s, harbors a fund of ****-won wisdom.

He won't ask me to fix his kidneys or his heart, I think. He'll say something noble and poignant: "I'd like to see my great-granddaughter get married next spring," or "Help me to live long enough so that my wife and I can celebrate our 60th wedding anniversary."

His daughter, looking tense, also faces her father and waits.

"I would like to be able to walk without falling," he says. "Falling is horrible."

This catches me off guard.

That's all?

But it makes perfect sense. With challenging medical conditions commanding his caregivers' attention, something as simple as walking is easily overlooked.

A wonderful geriatric nurse practitioner's words come to mind: "Our goal for younger people is to help them live long and healthy lives; our goal for older patients should be to maximize their function."

Suddenly I feel that I may be able to help, after all.

"We can order physical therapy - and there's no need to admit you to the hospital for that," I suggest, unsure of how this will go over.

He smiles. His daughter sighs with relief.

"He really wants to stay at home," she says matter-of-factly.

As new as our doctor-patient relationship is, I feel emboldened to tackle the big, unspoken question looming over us.

"I know that you've decided against dialysis, and I can understand your decision," I say. "And with your heart failure getting worse, your health is unlikely to improve."

He nods.

"We have services designed to help keep you comfortable for whatever time you have left," I venture. "And you could stay at home."

Again, his daughter looks relieved. And he seems .?.?. well .?.?. surprisingly fine with the plan.

I call our hospice service, arranging for a nurse to visit him later today to set up physical therapy and to begin plans to help him to stay comfortable - at home.
Back home

Although I never see him again, over the next few months I sign the order forms faxed by his hospice nurses. I speak once with his granddaughter. It's somewhat **** on his wife to have him die at home, she says, but he's adamant that he wants to stay there.

A faxed request for sublingual morphine (used in the terminal stages of dying) prompts me to call to check up on him.

The nurse confirms that he is near death.

I feel a twinge of misgiving: Is his family happy with the process that I set in place? Does our one brief encounter qualify me to be his primary-care provider? Should I visit them all at home?

Two days later, and two months after we first met, I fill out his death certificate.

Looking back, I reflect: He didn't go back to the hospital, he had no more falls, and he died at home, which is what he wanted. But I wonder if his wife felt the same.

Several months later, a new name appears on my patient schedule: It's his wife.

"My family all thought I should see you," she explains.

She, too, is in her late 80s and frail, but independent and mentally sharp. Yes, she is grieving the loss of her husband, and she's lost some weight. No, she isn't depressed. Her husband died peacefully at home, and it felt like the right thing for everyone.

"He liked you," she says.

She's suffering from fatigue and anemia. About a year ago, a hematologist diagnosed her with myelodysplasia (a bone marrow failure, often terminal). But six months back, she stopped going for medical care.

I ask why.

"They were just doing more and more tests," she says. "And I wasn't getting any better."

Now I know what to do. I look her in the eye and ask:

"What are your goals for your care, and how can I help you?"

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41 Answers

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Nice article Saul. I rarely take the time here to ever read one, but this was worth it.

I have an elderly mother who is suffering all sorts of medical conditions. She hasn't seen a doctor in years and I am sometimes frustrated that she don't want to do anything to extend her life. But her outlook is a wise one. She knows the inevitable will happen, but she wants it on her terms. I think I am beginning to understand.

It's the last bit of control she feels she has. I can't deny her that one.
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When I reach that stage in life I want a doctor like this one.
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Awww...I know the experience. I couldn't put the book down. No one likes to talk about death, but it makes you realize that at a certain age, the body shuts down. It makes you understand also what is not in your hands.

What made me pick up the book was seeing this doctor (who is recently deceased now) do a talk. He was featured on one episode of TED talks on Netflix. His own story is amazing. He suffered a sort of nervous breakdown in the early seventies when he was enjoying a career as a gifted surgeon. He became so sick that he ***** up in a hospital and was scheduled for a lobotomy when all the treatments they tried had failed!!!! Some young med student suggested they try ECT (Electroconvulsive therapy) on him as an experiment (it wasn't very well received in that day) before they resorted to the lobotomy. The ECT didn't work until the 18th treatment and he was not only spared the lobotomy, he got out of the hospital and picked up his career again! Can you imagine? So the man has great compassion as a doctor.

I think the book will bring you some comfort.
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What a story! Thanks Peapod.
Was the doctor the author of the book? I subscribe to TED and would like to see the lecture. Might be able to find it in their archives.
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<!-- Yes! He never mentions his his breakdown in the book, but tells the story in detail on the TED talks. Sherwin Nuland.<br><br>I must have listened to that episode a half dozen times. If anyone could have given up, it could have been him. It gives hope to a lot of people suffering from clinical depression.<br><br> <OBJECT orig_size="425x355" width="350" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" id="1426365168.16" height="292"><param name="allowNetworking" value="internal"><param name="allowScriptAccess" value="never"><param name="enableJSURL" value="false"><param name="enableHREF" value="false"><param name="saveEmbedTags" value="true"><param name="movie" value="https://www.youtube.com/v/oEZrAGdZ1i8&amp;rel=1&amp;autoplay=0"><param name="wmode" value="transparent"><embed src="https://www.youtube.com/v/oEZrAGdZ1i8&amp;rel=1&amp;autoplay=0" allowNetworking="internal" wmode="transparent" allowScriptAccess="never" enableHREF="false" height="292" width="350" enableJSURL="false" autostart="false" orig_size="425x355" type="application/x-shockwave-flash"></OBJECT> -->Yes! He never mentions his his breakdown in the book, but tells the story in detail on the TED talks. Sherwin Nuland.

I must have listened to that episode a half dozen times. If anyone could have given up, it could have been him. It gives hope to a lot of people suffering from clinical depression.

image
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Thank you so much, Peapod. I will look for his lecture I have ordered the book....
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It's attached right above. You can click on it and play it. :)
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Yes. You are very sweet. Thank you.
I once worked as a volunteer for county mental health. I was ******** to a woman my age who was clinically shizo on meds, and recently released from the state mental hospital.. She believed that she was the female incarnation of Jesus., Let's just say that feces came into play. My job was to help her reintegrate into normal society. Long story. Fascinating and very upsetting experience. Unfortunately we failed. She was not the only one. There was another client when I went to work for county social services (one of my first real jobs in social services). My ********** was the same-reintegrate a previous patient from the same hospital. This was in the late 1970's.. Everything his case manager and I could do was a total failure. She was a tough lady, a former Army psychiatrist, but in the *** we sat on a curb together, she cried on my shoulder while I sort of stared into space
Bleeding heart libs, I guess.....
Again, long story.
Both of these clients were arrested. I think you know what I am getting at. There are people on this website who do not believe how bad it can get
I also understand pure and utter depression. It ***** the big one.
Another long story. Been there, done that with more than a few people.
Aging and chronic debilitating illness a...





Yes. You are very sweet. Thank you.
I once worked as a volunteer for county mental health. I was ******** to a woman my age who was clinically shizo on meds, and recently released from the state mental hospital.. She believed that she was the female incarnation of Jesus., Let's just say that feces came into play. My job was to help her reintegrate into normal society. Long story. Fascinating and very upsetting experience. Unfortunately we failed. She was not the only one. There was another client when I went to work for county social services (one of my first real jobs in social services). My ********** was the same-reintegrate a previous patient from the same hospital. This was in the late 1970's.. Everything his case manager and I could do was a total failure. She was a tough lady, a former Army psychiatrist, but in the *** we sat on a curb together, she cried on my shoulder while I sort of stared into space
Bleeding heart libs, I guess.....
Again, long story.
Both of these clients were arrested. I think you know what I am getting at. There are people on this website who do not believe how bad it can get
I also understand pure and utter depression. It ***** the big one.
Another long story. Been there, done that with more than a few people.
Aging and chronic debilitating illness and ********** depression are off the radar for too many so called true blue patriots, something theycall a hoax created by the liberal left.in order to force upon the nation a "communist " nation or submit to one world
rule..
I am rambling and need to go to bed, but I am baffled by the inhumanity I see on **. so often. My consolation is that they truly belong to a tiny minority.
I have so many other thoughts on the issues here.
Thanks again!!!!
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simple and straight to the point, love that. Thank you for sharing this wonderful story.
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Make sure your relatives know how you feel, as well. They may feel they are taking better care of you than you want..
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It's really tough Imagypsy. I watched this with my own dad before he died. Luckily, no extra measures were taken when he was in the nursing home. He died peacefully in his sleep and was very lucky.

I just read a book that came out years ago, but it's an excellent read and it's by a doctor. His views on the elderly and the dying process are very compassionate. He is a remarkable man. I recommend this to anyone dealing with this issue.

how we die
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I have told them several times. They say they understand, but I am healthy now so it is not really an issue.
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Get it in writing and on file with everyone who may have anything to do with it including your doctor, priest or minister, closest relatives, lawyer, CPA, etc. . A bust could hit you tomorrow.
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The way it should be.

Thanks for the post.
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Excellent article. Went thru that with my dad, everyone telling me what I was doing wrong in caring for him at the ***. He asked me to get him out of the hospital so I just gathered his belongings and wheeled him out to my car. It was his wishes that mattered.
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Bless you, Peewee....
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Excellent, a doctor whose purpose was to help his patient not his wallet.
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Excellent questions. I don't wait on my doctor, I tell them right away what my goals are.
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Good for you, Rod.
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I will order the book today. Thanks, Peapod. I think your Mom, and you, are very wise
I went through it with my Mom, at least part of the way. It was about 6 months from diagnosis to her death. She stayed at home and toward the very ***, my Dad told us "kids" not to be hanging around too much (he told my sis not to cancel a planned vacation for our parents' sake, for example), that it was their time to remember and relive their life together without interference. Neither of them wanted extreme measures taken to prolong her life. She was ready and at peace the last time I saw her about 2 weeks before she died. I was on the phone with her the day before, and she was too weak to speak, but I understood she was trying to say good-bye, I know. I had returned to my home state 1200 miles away after being at my parents' home to help out .
Hospice was involved, but only as much as needed. They are the BEST.
My Dad, when his memory was good, told the story of waking one morning to my Mom calling him, and asking for some Coke, He went to her and kissed her on the lips, and she stopped breathing. He always said he inhaled her last breath, and she died smiling.How great is that?
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Excellent. Peapod. I am going through it with my elderly Dad. The last two months or so have been a real roller coaster. When the only goal is to keep the body alive at any cost, it's time to start asking questions, and especially the one directed straight to the patient: what do they want?
I had a doctor who would have asked that question but in another place, and she retired, too. I wish she had been my Dad's family doc..
He feels much better, thank heaven, but time marches on. There will be more crises. .
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Very cool :)
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Exactly. I was the primary care giver. Since there was the very real possibility of disputes I urged them both to do their wills, trusts and final instructions IN WRITING. I found them a great lawyer who put it all together in one neat package.
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I WENT TO THE LINK AND SHARED IT ON ALL MY SOCIAL NETWORK SITES. This was an excellent article and may reach many hopefully to put humanity back into care. It is a doctor's job to help and save but ultimately when given the information, most will make decisions that's best for all included especially that of the individual
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Everyone should have a Living Will, DNR, Advanced Directives, and a Power of Attorney in their medical records. These documents make the patient's wishes known in case of a medical emergency and are available at your doctor's office. Most people refuse to discuss this issue and will not sign these documents leaving decisions for medical care up to family members who frequently disagree.

Medicare spends 30% of total expenditures for 5% of recipients who are elderly people in their last year of life - 40% for the last month of life, 12% in the last two months of life - this means 10% of recipients spend 70% of the budget. About 1/3 of terminally ill patients with insurance spend their entire life savings in their final year of life and leave surviving spouses in debt. Americans do not like to talk about *** of life or death but death is a part of life we all must face. I would rather have pain free comfort and care than exist on life supporting machines like respirators. I would also prefer to be at home than on the road for docctor appointments, in clinics getting treatments, or alone in a hospital bed.
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Great article Saul. Thanks for posting it. It's something every doctor should do, but many are too quick with the prescription pad, ignoring the patient's needs and/or wants. I fear the bottom line is ALWAYS money. and unfortunately, the sick and elderly are a booming business.
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Thanks Saul. Great article. My dad is in his 80s and my mom turns 80 next year so I know my family will be facing these events and issues soon.
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You gave him just what he needed . His dignity .
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Last year I lost both my parents. Fortunately for the family they had put into writing exactly what they wanted done during the last days of their lives. There were no misunderstandings and everyone agreed with what they wanted. They both died peacefully in their sleep.
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That's a very important point. Anyone with a senior parent should make sure that they have all of their wishes IN WRITING, and should probably re-execute the documents every year or so. Doctors and hospitals aren't always willing to accept something signed ten years ago, but if they're less than a year old there's not much they can argue about.
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Interesting and I can relate. I've had the "quality of life" discussion with my elderly, sick mother....but I've never heard even one of her many doctors address it other than to say that she can quit treatment anytime she wants.
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Nice article Saul. I rarely take the time here to ever read one, but this was worth it.

I have an elderly mother who is suffering all sorts of medical conditions. She hasn't seen a doctor in years and I am sometimes frustrated that she don't want to do anything to extend her life. But her outlook is a wise one. She knows the inevitable will happen, but she wants it on her terms. I think I am beginning to understand.

It's the last bit of control she feels she has. I can't deny her that one.
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Outstanding and a good Doctor who actually has a clue. That is all most of us want quality of life not quantity and enough with the procedures and popping pills.
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Excellent story. Quality of life is often times as important if not more so than quantity.
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This is an absolutely awesome piece!!!!! Every doctor should ask that question, but not only of the frail elderly . It should be asked of every patient with chronic and/or multiple medical problems as well. Being referred to specialist after specialist for test after test, experimenting with one drug after another only to find that it has serious or at least very unpleasant side effects that actually diminish the quality of life, is a cycle that anyone can find themselves in.
It would also help that every doctor one goes to has actually taken at least a quick look at the patient's medical history, the one they demand that you have sent to them before they see you or treat you. Very often, the doctor is totally ignorant of very important information concerning a new patient, even though they have the patient's medical records sitting right in front of them. I know it takes more time, but doctors out there, it will save you time in the long run if the patient, a layperson, who probably does know as much about his/her condition as any single doctor they are seeing, or MORE, doesn't have to try to explain their entire history during their visit with you and how it all fits together.. In other words, don't pay attention only to the part of the body you specialize in. Take a look at the ENTIRE body and how the part the patient has come to you to look at is interacting with other trouble spots.Not doing so is often responsible for setting up the patient in the ******* cycle.
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Wonderful article and so insightful. "...if you want to know what I want, ask me." At the big 79, I feel fine mentally and, except for replacement joints, physically great,-and I'm coming to that point myself. Wouldn't it be nice if this man were my Doctor?
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I like this guy. To bad he isnt in Sacramento or even California.
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Yes ,this a good thing to ask!
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Excellent. If only more Docter's "got" it instead of devising ways to bill the insurance.
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Wonderful, not many doctors like that these days.
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Been there, done that, at least from the family side. Most doctors like to treat getting old as a disease, more pills, more tests, and a last ditch effort in the hospital. Sometimes family has to step up and make the doctors listen to what the paitent wants,...
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