Category Archives: death is part of life

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Opiate overuse: a change in diagnostic criteria

In the DSM IV, that is, the Diagnostic and Statistical Manual of Mental Disorders, opioid dependence disorder and opioid addiction disorder are separate. Everyone on a chronic pain medicine for a length of time was expected to be dependent, but not addicted. Addiction was considered rare and was thought to be mostly people who abused opiates. Who took them for pleasure. Oxycontin, heroin, vicodon. Those bad people who were partying. Got what they deserved, didn’t they?

That has changed. My feeling was that it’s been a long time coming, but no one asked me.

In the DSM V, opioid dependence and opioid addiction have been combined into “Opioid Use Disorder”. They are no longer considered separate. They are a spectrum. Anyone who is on chronic opioids is on that spectrum. This is a big change. It has not really penetrated the doctors’ consciousness, much less the patients.

It is quite simple to score. There are 11 criteria. They are yes and no questions. Score and add up. The patients are scored mild, moderate or severe.

Here are the criteria:

Opioid Use Disorder requires meeting 2 or more criteria; increasing severity of use disorder with increasing number of criteria met.

1. Recurrent substance use resulting in a failure to fulfill major role obligations at work, school, or home.

2. Recurrent substance use in situations in which it is physically hazardous.

3. Continued substance use despite having persistent or recurrent social or interpersonal problems caused or exacerbated by the effects of the substance.

4. Tolerance, as defined by either of the following:

(a) a need for markedly increased amounts of the substance to achieve intoxication of desired effect.
(b) markedly diminished effect with continued use of the same amount of the substance.

5. Withdrawal, as manifested by either of the following:

(a) the characteristic withdrawal syndrome or
(b) the same (or a closely related) substance is taken to relieve or avoid withdrawal symptoms.

6. The substance is often taken in larger amounts or over a longer period of time than intended.

7. There is a persistent desire or unsuccessful efforts to cut down or control substance use.

8. A great deal of time is spent in activities necessary to obtain the substance, use of the substance or recover from its effects.

9. Important social, occupational, or recreational activities are given up or reduced because of substance use.

10. The substance use is continued despite knowledge of having a persistent or recurrent physical or psychological problem that is likely to have been caused or exacerbated by the substance.

11. Craving or a strong desire to use opioids.

Mild substance use disorder is yes to 2-3 of these.

My chronic pain patients ask, “Why do you treat me like a drug addict?”

The answer now is, “Because you are on a chronic opiate.”

I am starting to use the criteria in clinic. When I get a new chronic pain patient, I give them the list. I let them tell me.

It is hard because they often recognize 3 or 4 or 5 or more things on the list. They say, “So this is saying I’m addicted.”

“I’m afraid so.”

They grieve.

I am posting this because people are dying. The number of people dying from prescription medicine overdoses taken correctly has outstripped illegal drug use deaths, approximately 27,000 unintentional overdose deaths in 2007.

Here: CDC Grand Grand Rounds: Prescription Drug Overdoses – a U. S. Epidemic.

http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6101a3.htm

The CDC article says: “The two main populations in the United States at risk for prescription drug overdose are the approximately 9 million persons who report long-term medical use of opioids, and the roughly 5 million persons who report nonmedical use (i.e., use without a prescription or medical need), in the past month.”That is “approximately” 14 million people.

Please tell your friends and those you love about this. Thank you.

first published on everything2 on June 4, 2014.

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Cost comparison of brain MRI

I called Advanced Medical Imaging (AMI) in May 2014 to get a prior authorization for a brain MRI with and without contrast.

This is for a woman under 65 who is having short term memory problems. We are looking for treatable causes of short term memory loss. The blood work is negative. Next is the MRI.

Her MRI is already scheduled at the local hospital where I worked for nine years. It is the only hospital because we are a small county.

The AMI representative suggested that the patient get the MRI in Everett.

“The cost there is $917.00. It would be cheaper. It is only 29 miles away.”

“Yes, but Everett is across the sound. She’d have to drive around or take a ferry. What is the cost in Bremerton?” I asked. “At the radiology providers there?”

“The cost there is $967.00.”

“And where she is scheduled?” My local hospital has a “Rural Hospital” designation. Medicare will pay them more than other hospitals.

“$4585.00.”

I squeaked. “For the same MRI?”

“Yes.”

“Um. You should tell the patient.” Except that, is the patient willing to drive to Bremerton? And is the cost to the patient the same? And do they care?

“Do you want the prior authorization for that site.”

“Can it be changed if I talk to the patient?”

“Yes, she can call us.”

The prior authorizations are now site specific. That is, I’m getting approval for the MRI at a specific place. I have no idea why.* Seems stupid. Seems like just another hoop to remember to jump through and if we get it wrong the insurance can say, “Oh, ha, ha, ha, we don’t have to pay for that. You do.” Chalk up some more profit for the investors. Mission accomplished, money made.

I called the woman and explained. She was willing to go to Bremerton and said that she would call AMI. I asked her to call us back if she had any trouble.

The cost really matters to my medicare patients and any patient that has to pay a percentage of the cost. If they only have medicare part B, with no secondary, they pay 20% of the bill. 20% of 4500.00 is a lot more than 20% of $900. But some of my frailest most elderly most confused don’t really have a choice. Going 29 miles might as well be going to the moon.

And this is a woman with memory loss, remember? She wrote down the instructions and repeated them back to me three times.

Every phone call to insurance is like this, and makes me wonder about our culture.

* Actually, the authorizations are site specific because some places are “out of network” and the insurance won’t cover anything done there. Though I think the whole point of health insurance in the US is to try to remove money from people and avoid paying for care.

This was first posted at everything2 on Friday May 9, 2014. The woman died last month.

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sometimes the hummingbird

sometimes the hummingbird

Boa cat
meows
the meow that means she’s caught something
and wants to show me

and I go to look
it is a hummingbird
probably immature
dead

I pat her and praise her
Good Boa
I see what you caught

She taps the hummingbird
around the room a few times
but it is dead

so she eats it

and I’m crying

sometimes the hummingbird
gets eaten

and that is ok

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Old men never die, they just spout poetry

When I was in residency we rotated through the Veterans Hospital in Portland. Most of our patients were either very elderly or they were alcoholics or addicts in their 50s, starting to really go downhill medically.

One elderly patient is particularly vivid in my memory. He was in his 80s and black. He was weak and had various problems. I was not doing a very good job of sorting him out.

He wouldn’t answer questions. Or rather, he would give a reply, but it was not yes or no and I couldn’t figure out how the answer related to the question.

On the third day he gave a long reply to a question and I recognized it.

“That’s Longfellow,” I said. He nearly smiled. “We did a bike trip around Nova Scotia and read Evangeline aloud in the tents at night. The mosquitos tried to eat us alive. That’s Longfellow, isn’t it?”

He wouldn’t answer but the twinkle in his eye indicated yes.

So our visits were cryptic but fun. I would try to guess the author. He knew acres of poetry, all stored in his brain, no effort. I tried to relate the poems to my questions to see if he was answering indirectly. I wondered if he had schizophrenia and these were answers, but I didn’t think so. I thought he was just stubborn and refusing to answer.

I challenged him. “Ok, you are the right age. Come up with a song with my first name that is from early in the century. My father used to sing it to me when I was little. Can you?”

The next day he sang to me: “K-k-k-katy, beautiful Katy, you’re the only beautiful girl that I adore. When the m-moon shines, over the cow shed, I’ll be waiting by the k-k-k-kitchen door.”

We sat and grinned at each other. Soon afterward I moved on to the next rotation. I don’t remember his medical problems. But I remember him and remember wondering what he had done in his life to have a memory and a store of poetry in his head. A teacher? A professor? A man who loved poetry? I started matching him with my own store of poems, the Walrus and the Carpenter, songs, bits and pieces.  I felt blessed and approved of when his eyes twinkled at me, when I recognized an author or even recognized the poem itself. I looked forward to seeing him on rounds, daily. And he seemed to look forward to my visits. I was sad when I had to say goodbye and the next rotation was out of town. And since he had never told us his name, no way to stay in touch. Farewell, poetry man, fare thee well.

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Obese smoking couch potato

I went on the Mad as Hell Doctor’s tour for a week. I went from Seattle to Denver with stops for town halls one to three times a day. We talked about single payer health insurance, HR 676.

One question or objection to a single payer system was: Why should my money go to pay for some obese person who drinks and smokes, doesn’t exercise and doesn’t eat right?

Three answers to start with:

1. You already pay for them.

2. Put out the fire.

3. People want to change.

First: You already pay for them. As a society, we have agreed that people who show up in an emergency room get care. Suppose we have a 53 year old man, laid off, lost his insurance, not exercising, not eating right, smokes, drinks some and he starts having chest pain. Suppose that he lives in my small town.

He calls an ambulance. They take him to our rural emergency room. Oh, yes, he is having a heart attack, so they call a helicopter to life flight him from small town hospital to a big one in Seattle. This alone costs somewhere between $7000 and $12000. Now, do you know how many clinic visit he could have had for $7000? To see me, a lowly rural specialist in Family Practice where I would have looked at his blood pressure and nagged, that is, encouraged him to stop smoking. We would have talked about alcohol and depression. And who is paying for the helicopter meanwhile? All of us. The hospital has to pass on the costs of the uninsured to the rest of the community, the government is paying us extra, with a rural hospital designation. 60% of health care dollars already flow through the government. One estimate of the money freed from administrative costs by changing to a single payer system is $500 billion.

Taking care of people only when they have their big heart attack is ridiculously expensive. It is a bit like driving a car and never ever doing maintenance until suddenly it dies on the highway. No oil, tires flat, transmission shot and ran into a tree in the rain because the windshield wiper fluid had been gone for a while. I get to take care of Uncle Alfred. He is 80 and has not seen a doctor for 30 years and is now in the hospital. “But he’s been fine,” says the family. Nope. He has had high blood pressure for years, that has led to heart failure, he has moderate kidney failure, his lungs are shot from smoking, turns out he developed diabetes sometime in the last 30 years and he’s going blind. Can’t hear much either. We have a minor celebration in the ICU because he doesn’t drink, so his liver actually works. He goes home on 8 new medicines.

Secondly: Put out the fire. When someone’s house is burning down, as a society we do not say, well, she didn’t store her paint thinner right or trim her topiary enough and she has too many newspapers stacked up. We go put out the fire. Putting out the fire helps us as a society: it keeps the fire from spreading to other houses. It saves lives and is compassionate. We think firemen and women are heros and heroines. And they are.

In the past, a homeowner would have to pay for fire service and would have a sign on their home. If the house was on fire and a different company was going by, that company wouldn’t put out the fire. We have the equivalent with health insurance right now. It would be much more efficient and less costly to have a single payer. Medicare has a 3% overhead: it is a public fund paying private doctors and hospitals. The VA is a socialized system, with the hospitals owned by the government and the medical personnel paid by them.

When someone asks why they should help someone else, I also know that they haven’t been hit yet. They have not gotten rheumatoid arthritis at age 32 or had another driver run in to them and broken bones or had another unexpected surprise illness or injury that happened in spite of the fact that they don’t smoke, don’t drink, eat right and exercise. Everyone has a health challenge at sometime in their life.

Third: people want to get better. Really. In clinic I do not see anyone who doesn’t hope a little that their life could change, that they could lose weight, stop smoking. True, there are some drinkers who are in denial, but I will never forget taking the time to tell a patient why he would die of liver failure if he didn’t stop drinking. He came back 6 weeks later sober. I said, “You are sober!” (We don’t see that response very frequently.) He looked at me in surprise: “You said I’d die if I didn’t stop.” He never drank again. It made it really hard to be totally cynical about alcohol and I can’t do it. People change and there is hope for change. I feel completely blessed to support change in clinic and watch people do it. They are amazing. But they need support and they need someone to listen and they need a place to take their fears and their confusion. Primary care is, in a sense, a job of nagging. But it is also a job of celebration because people do get better.

We are already paying, in an expensive, inefficient and dysfunctional way. It saves money to put out the fire. People want to get better. Winston Churchill said, “Americans always do the right thing after they have exhausted all other possibilities.” It is time to do the right thing. Single payer. The current bill is HR676. We can and we will.

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Death Panel 2

I had three immediate choices of what to do this morning.

1. Go to the Quilcene Fair with my daughter, her friend and another mom and an almost 1 year old.

2. Go on the Victorian Historic House Tour, a yearly fund raiser for the local hospital auxiliary.

3. Go to visit a patient that I have known for about eight years who will probably die soon of heart failure.

Which did I most want to do?

3. Visit my patient and she is a friend too.

At this point, with the present technology, we doctors CAN’T keep people alive on a machine. We might be able to prolong life some. Hours, days, weeks. The case where someone can stay alive on a machine is actually exceedingly rare, and they will NOT live forever either. Eventually people die.

I visited my lady at home. She looks rather frail and awful but she is coherent, recognized me and we had a lovely visit for nearly thirty minutes. She has heart failure and has outlived all predictions by years. Heart failure is pump failure. The heart is a pump made of muscle and is supposed to pump out 55-70% of the blood in the left ventricle with each beat. If it pumps less than that, the person has heart failure. My lady was down to 17% at one point and has needed oxygen for years. It will probably not be her heart that is the final problem: her kidneys are failing more and more. We are getting to the place where the balancing act becomes impossible. If we use medicines to make her heart pump adequately, then her kidneys fail. If we fix the kidneys, we lose the heart. If the pump isn’t working, the fluid builds up in her lungs and that feels terrible. Kidney failure slowly and gently lulls people to sleep; going to sleep until one does not wake up is a farewell with much less suffering.

I was very pleased to be able to visit her. She has lived far beyond expectations because she is smart and stubborn, comes to the hospital when she is sick, and has single payer insurance: that is, medicare. We spent much of the visit talking about the political system. She wants a single payer system for everyone too and was glad to hear about the Mad as Hell Doctors.

I called the doctor who told me that my lady was worsening and thanked her. She asked if our patient would make it through the weekend. I said that I thought so, but since she is refusing lab work, we don’t really know. She might be worse tomorrow.

There seems to be fear that extending medicare to everyone will mean that “granny will die from refusal of care.” Granny dies now. Everyone will die eventually. I am hopeful that I have many years yet, but none of us know. The fear that care will be rationed ignores the concerns that I have about the end of life: we don’t discuss it and so there is enormous fear and confusion; and that some of the treatments add only hours or days or weeks at enormous cost.

When I first moved to Port Townsend, I was taking care of many elderly frail sick patients. I went to our internist, Dr. L.

I said, “I keep seeing very ill patients in their 80s and 90s that have pulled through THIS hospitalization, but that I think will probably die soon. They and their families don’t seem to know it. What should I do?”

Dr. L. said, “You do them a great favor if you tell them. If you have a frank discussion with them, they and their families can make decisions and have a special time. Doctors do not tell patients often enough.”

Since then, I have had that discussion many times. It is never an easy discussion but it is important and feels right. I say that I might be wrong and would be happy for the person to live 10 more years and prove me wrong. We often discuss how much care they want and whether they would want to die at home. If we can have the family in the discussion, all the better.

Once I had a call from the daughter of a patient whose name I knew. The patient saw my partner. I said, “Forgive me, but I know your mother’s name and I heard that she was dying.”

There was a long silence and the daughter said, “I wondered if she was, but no one said anything, so I thought I must be wrong.” The daughter had nearly called an ambulance because she was afraid her mother was uncomfortable, but she also knew her mother did not want to go back to the hospital.

We were able to discuss what was happening and how to keep her mother as comfortable as possible. The daughter was to call me back if they needed transport to the hospital to ensure that her mother was comfortable. The call, however, was enough. Her mother died at home within 48 hours. We had talked about kidney failure and how the breathing changes near the end. The daughter was frightened. She later thanked me for explaining what was and would happen.

We all need to speak up about death. There will be less fear and better care if we can speak.

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on the road, September 12

I wrote this on September 12, at the Salt Lake City Library.

I am on the road with the madashelldoctors, day 5.

I am a Mad As Hell Doctor because my patients are not coming in. They are calling to get refills because they have lost their jobs, lost their health insurance, are losing their houses, are stressed and frightened. We Americans agree that anyone who shows up at the  emergency room has to have care, but that is last minute care. We give care when someone is dying, their cancer is advanced, their heart attack is happening, they are near death. It is expensive, inefficient and stupid. This road trip brings home that we take better care of our highways and rest stops than we do of our citizens. How can we have life, liberty and the pursuit of happiness without health? Our health is our wealth! Single payer, one system, just like police, highways, our mail — single payer is the way to go! It is time to get mad and make Congress put it back on the agenda! It is an embarrassment to have a Canadian citizen ask, “Why don’t you Americans take care of your own people?” and I want my health care dollar to go 100% for health care, not for insurance company profits and CEO salaries over 14 million dollars yearly. Fire them! Single payer!

HR676! A single payer proposal. Remember that the insurance companies are pouring 1.4 million dollars a day into lobbying to protect their profits!

Follow us on the website and fight the corporate medical behemoth!

Yours,

On the road, incoherant and down to 6% computer power….

Katherine Ottaway MD

1:42pm

Salt Lake City Library

Whew, finally computer access. We haven’t had time.

This morning we awoke to a knock on the door at 5:59 in a Motel 6 in Idaho Falls, Idaho. We were supposed to be on the road at 6:00. I am rooming with Barbara, a researcher from the Department of Family Practice at the University of Washington. We rushed around and left before most of the guys.

On the road, to Pocatello, Idaho, to the Holt Arena Park, S. 18th Avenue and E. Bonneville Street. We were early and went to find coffee for everyone. We wondered for a bit if Starbuck’s had missed Pocatello, but no, hidden in a grocery store.

In spite of the fact that it was 8:30 am on Saturday, nice crowd. Adam introduced the single payer theme, each doctor said why they personally were mad as hell, and then the audience was invited to step up. Each person has one minute to say why they are Mad As Hell. A woman who has been at two previous venues spoke and said that her beloved had committed suicide because he couldn’t pay his medical bills. I hugged her afterwards. She said that she had to leave us now and it was her last chance to tell us. She was very brave.

An elderly woman with a red-tipped blind person’s cane said, “I’m covered but the woman who helps me and cleans house for me has no insurance. She has breast cancer, two lumps removed, but it’s been infected and she has no money for chemotherapy or radiation It is a shame on us as Americans.” People are speaking up and the more people that speak, the more we all realize that it isn’t just a few people but everyone has been touched by this. Two thirds of bankruptcies are for medical bills and we are the ONLY industrialized country where you CAN go backrupt from medical bills.

Our next Town Hall is here in the Salt Lake City Library at 3:00 pm. We’ve been trying to cut the program down to 90 minutes, from two hours. We are getting used to the pattern. Yesterday I woke up feeling like death warmed over from a combination of exhaustion, 4500 foot altitude and one beer (I know, I’m a wimp with alcohol). Got on the road anyhow and Barbara drove the 250 miles from Helena to Idaho Falls while I displayed my talent at sleeping anywhere. By the time we met the caravan, I was shaky but improved and by the time we did the Town Hall at 7:00 pm, I was fine. Adam has nearly lost his voice but still is the MC and everyone is a bit glassy eyed and tired. We have to look at the notebooks to remember which city we are in. “What day is it?” we ask each other.

I will blog when I get a chance.

Town halls coming up:

9/12/09 Orem, Utah: Utah Valley University Student Center Room 206C 7:00 tonight

9/13/09 Rally at Fort Collins, 4:30 pm @ Civic Center Park, corner of LaPorte Ave & Howes street, Fort Collins, Colorado

9/13/09 Town Hall 7:00 pm Greyrock Commons, 2265 Shooting Star, Fort Collins, Colorado

9/14/09 Town Hall 8:30 am Plymouth Congregational Church, 916 W. Prospect Road, Fort Collins, Colorado

9/14/09 Rally Denver 12:00 (noon) West Steps, State Capitol Building 200 E. Colfax Ave, Denver, Colorado

(I leave on a 5 pm plane for my daughter and home.)

9/14/09 Town Hall — Picnic 5:00 pm Washington Park Boathouse, E. Virginia Ave and S. Downing Street, Denver, Colorado

….and I don’t have the rest of the schedule, but caravan from Gettysburg to the White House on 9/30/09 and meet us in Lafayette Park in Washington DC on October 1, 2009!

Originally published on Everything2.

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Rationing Health Care

A little article in JAMA (Journal of the American Medical Association) caught my attention yesterday:

Cancer Drug Costs

Citing the extremely high cost of many cancer drugs that produce only a marginal survival benefit, scientists from the National Institutes of Health (NIH)Clinical Center and the National Cancer Institute are urging the oncology community, regulators, drug makers, and the public to begin to set limits on the use or pricing of such drugs.

The scientists noted that 90% of the anticancer drugs of biologics approved by the US Food and Drug Administration (FDA) in the past 4 years cost more than $20,000 for a 12-week regimen, but many offer an additional survival benefit of only 2 months or less (Fojo T and Grady C. J Natl Cancer Inst. doi: 10.1093/jnci/djp 177 published online ahead of print June 29, 2009). For example, a study presented in 2008 found that adding cetuximab to other chemotherapies extended life by only 1.2 months at considerable cost: in the United States, 18 weeks of the drug cost $80,000, which translates to $800,000 for a single additional year of life for 1 patient. The researchers also point out that many studies that do demonstrate a small survival benefit do not take into account a patient’s quality of life.

The authors recommend several measures to reign (sic) in such unsustainable spending on drugs with minimal benefits, including limiting price based on survival benefit, more stringent requirements for toxicity, discouraging the use of such drugs in patients with advanced cancer, and approving or prescribing drugs only for the subset of patients for whom they have been demonstrated to be effective.

–Health Agencies Update, JAMA, August 26,2009 vol 302, No. 8 p.838

My mother died of ovarian cancer in 2000. It had recurred. Her CA-125 marker was rising again. She walked bent over, because her abdomon hurt. She was only taking ibuprofen. She said, “I can have more chemotherapy or go be in a clinical trial.”

I went with her to her cancer doctor. Dr. X is kind and sweet. She said, “We can start another round of chemo.” Dr. X was perfectly willing to answer questions, but only answered if they asked.

My mother said, “Ok.”

I said, “My mother keeps losing weight. Do you think that taking a stronger medicine than ibuprofen would help her gain some weight?”

This was pure hooey. Narcotics do not help people gain weight. My mother was losing weight because the cancer was so big that it was stealing all the nutrition.

But Dr. X understood. “Oh! We should give it a try. Here.” She wrote a prescription for percoset, thank goodness. “Now you try this instead.”

I followed Dr. X out of the room. “My mother thinks that she could be in a clinical trial.”

“No,” said Dr. X “The cancer is too advanced and she’s been through too many treatments. But, we will give her chemo for as long as she wants.”

We went home.

Think of the questions that neither my mother nor my father asked.

Will this prolong my survival?

How much will this prolong my survival?

How sick will it make me?

What does it cost?

If your mother was in my shoes, would you recommend taking this?

My parents didn’t ask and Dr. X did not answer anything that they didn’t ask. My mother did not want to know.

A week later, my mother said, “You know, that percoset is helping. I didn’t realize how much I was really hurting.”

She was walking more easily, though still bent over.

Within a few months she was admitted to the hospital with her intestines entirely blocked by cancer. We took her home, hospice for 5 1/2 weeks, before she died.

We are afraid to talk about death, about cost, about whether a treatment is worth it.

I ran into the son of a woman who died last year.

“You know that you helped me more than anyone, with what you said.”

“What did I say?” I say a lot of things.

“I told you that my mother was back in the hospital and that she’d pulled through another pneumonia. You said, I’m glad and then, someday she won’t. I was shocked and then I thought, it’s true, some day she won’t. I went home and I changed what I was doing. We took time with the relatives and they came to visit and it was a very special time. She died about a year later.”

“Thank you for telling me. I’m glad that it helped.”

“Thank you.”

Originally posted on Everything2.

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Death Panel

I am amazed over and over by the term “Death Panel”. I was at a cabin for two weeks with no electricity, newspaper, television or radio and I return to cries of “Death Panel” which seems to be a name for visits to a primary care doctor to discuss end of life issues.
I spoke at a church this summer: the title was “End of Life Issues: Death, Dying and Dementia”. I specialize in Family Practice; I have delivered babies for 18 years and my oldest patient is 104. I love to work with families in life’s transitions: birth, illness, family planning and yes, death.
Everyone dies. Everyone is born. We have prenatal care. Our nation is in continuous discussion about birth: how to make it safe and a welcome and we talk about bonding and reducing premature births. We try to make the gestation healthy; we take vitamins and exercise and see our doctors regularly.
Why don’t we do the same for death?
There is some effort. Hospice is care for the end of life, but to be in hospice, a doctor must say that a person would reasonably be expected to die within six months. Honestly, doctors are not very well trained in this. The truth is that we tend to refer people to hospice within days or a few weeks of death. I was not  well trained in approaching the subject of hospice. Some patients see this as a death sentence: the doctor is saying that I WILL die within six months. I now approach it as a challenge for them. “I could refer you to hospice now, because you might die within six months. They will pay for your medicines and you actually do not HAVE to die within six months. If you live for two years once you are referred, they may fire you from hospice.” Yes, I have had people who were in hospice and came back out. More than one. And I referred one woman because her cardiologist had said her cancer would kill her and her cancer doctor had said that her heart would kill her and she’d already outlived both their predictions and was complaining about an expensive medicine. I said that since they both had told me she’d be dead over a year ago, I was certainly able to refer her to hospice. She thought about it, accepted and then beat the six months. I miss her.
I like to discuss end of life issues. It is not easy, but I would much rather have a difficult discussion than the alternative.
A friend brought her mother, in her upper 80s, to see me in clinic. Her mother was already well past the age when she was likely to die of a sudden heart attack. I started talking about strokes and that it takes 2-3 days for the swelling in the brain to go down. We support people and wait to see if they will be able to swallow. If a person does not recover the ability to swallow, I was explaining why they would die.
“I don’t want to think about this.” she said firmly.
“Well,” I said, “You don’t have to. BUT, if you do not tell us what you want, you might not be able to talk or communicate. If you can’t communicate, your daughter and I will have to make the decisions, and we will err on the side of doing things, treating, rather than not treating. So it is your decision.”
She thought about it. “All right. I am willing to talk about it.”
She did talk about it and she listened to the information about strokes, heart attacks, and told us that if she were sick she would rather stay in Port Townsend. She did not want to be transferred to a big Seattle hospital in the event of a big heart attack or stroke. She wanted to stay in our small hospital, near her family, and use the more limited resources here. She seemed to understand what these were and what we could and couldn’t do. Sometimes transfer to a bigger hospital can slow death, but sometimes it is only by hours or days.
She did have a stroke, some months later. She was able to communicate and her swallowing was affected. She indicated clearly that she wanted to go home. She went home and had her children, grandchildren and a great grandchild present to say goodbye. Her family was very sad but also were prepared, I think, and able to care for her at home. I visited the day before she died. It  made me think of a Norman Rockwell painting, with the great grandchild playing happily in the room with a big bed and the family gathered around.
Every person’s response to the end of life is personal, no two are alike. My job as a family physician includes notifying people when I think the end is nearing; asking for their preferences and trying to help the dying person and their family through this sacred transition as best I can.
If that is what a “Death Panel” is, then I have already been on one.
Originally posted on Everyhing2.