“Not Much Choice”

 Chronic Pain and Ills

Prepare for Mortality

Live Like You Can’t Die

 

Introduction to the Interview:

This post is an introduction to an interview, then an interview with a man named Mike whom I’ve known well for over 20 years. He suffers from chronic illness and chronic pain. A very useful book on some of the subjects covered in this interview is called “BEING MORTAL”, by Dr. Atul Gawande published in 2014. It outlines our society’s attitudes towards the aged and the disabled and our systems of caring for them. Another excellent, recent book is “THE PAIN CHRONICLES” by Melanie Thernstrom. It reviews the attitudes of society toward pain and the treatment of pain. This blog post deals with these issues of aging and medical infirmity including chronic pain and cancer. I am doing an interview together with a journalist, Cathy Zimmerman. We drove an hour to meet with Mike.

He greeted us at the door to his pleasant home in a neighborhood of east Vancouver, Washington. Mike is a 6 foot 5 inch tall tree trunk of a man. Aged 63, he is broad shouldered and appears robust at first glance. Upon closer inspection, I notice his face is somewhat pale and sweaty when we first arrive. He describes these spells as hot flashes due to a hormone secreted by his cancer cells. During our interview he periodically stands and stretches for awhile to relieve his back pain a little.

In the interview, he relates his transition from healthy young man to chronic illness and pain. We review his various conditions and the way they affect him and those around him, including his current wife and his first wife. He reviews interactions with the workman’s compensation system and his health insurance. He describes his coping mechanisms including the importance of the support of family, friends,  doctors and other medical care providers. He reviews some of the factors in what to look for in a doctor. The book Being Mortal analyzes doctor-patient communication and concludes on page 201 that the best style is one that Dr. Gawande refers to as “interpretive”. This style goes beyond the traditional “paternalistic” and “informative” styles and I believe describes what Mike looks for in doctors and medical care providers. Mike describes some of his previous and ongoing treatments including many operations. He relates the many obstacles and frustrations he’s had to surmount in his quest for a life worth living.

He is remarkably optimistic and resourceful. He is good-humored and articulate. He spent over 2 hours doing the interview, despite being in some constant pain. He provides insights that will be helpful to other people who also suffer chronic illness and chronic pain.  When Cathy asked him how he has managed to survive his numerous medical crises, he said, “Not much choice.”

 

 

INTERVIEW

40 years ago Mike was a healthy young man who loved to participate in many team sports and hunting. He enjoyed non-team sports with his friends. “I did a lot of dumb things when I was young”, he notes. He and his friends hugged the train tunnel wall by the cemetery as trains went through. They dropped under the tracks of the trestle of the bridge over the Missouri River onto cement supports when trains raced overhead.

He couldn’t imagine a life of illness and pain. At age 23 he developed blood clots in one leg with pieces of the clot traveling to his lungs. He has hospitalized for 3 weeks. “My wife was induced for delivering our first daughter when I was in the hospital. I was wheeled down the hall on a stretcher to be with her”. Even after that he couldn’t conceive that he would become chronically ill. “You’re pretty invincible when you are that age. I didn’t understand how serious it was until years later”.

Before our interview, he reviewed his health history with his 91 year old mother-in-law who lives with Mike and his wife. After doing this awhile, she said “Enough!”. The list of surgeries alone is formidable: 7 spine, 2 achilles tendon, 4 knee including 1 total knee replacement, gallbladder removal, shoulder surgery, kidney stone removal, exploratory abdominal surgery, and infusion of radioactive beads into the liver to fight the cancer.

His medical conditions include: blood clots mentioned earlier, serious injury to his back on 12/12/78, about age 27, spinal meningitis after a back surgery 20 years ago, an unusual type of cancer known as pancreatic neuroendocrine that he’s had probably for 10 years, pneumonia, arthritis, gallstones, kidney stones on 3 different occasions, shingles (1 year AFTER his shingles vaccine), chronic and severe lower back and cancer pain.

He hurt his back at work slipping on spilled chemicals. He fell 1 story onto his side and lower back area on a hardwood surface. 2 years, at least 12 myelograms (spinal canal X-rays using dye injected into the canal) and other tests later, it finally became apparent he had seriously herniated 2 discs in the low back area due to the injury.

PH: Tell us about your experiences during that time.

Mike: “I was not the same person. I was hard to get along with. I had little kids. I had some back surgeries after that. I had a lot of problems and pain with my surgeries. They dealt with it with pain medications; Percodan and Percocet. The surgeon was a real ass. If you weren’t well or better, he’d yell at you. One day he told my wife he didn’t want me as a patient anymore. He finally lost his license to practice. After that I ended up with a really nice orthopedic doctor. His wife was the county coroner at the time. He helped me and gave me wonderful advice on how to choose doctors.”

“Off and on I worked during that time. For years, the workman’s compensation program for the state was intimately involved with my case. They did everything they could to keep me going back to work. One day they put me on 100% disability and said “He’s on his own now”. They wouldn’t let you earn a dollar (doing other work) when you are on this. They give you a fund that is used to live on. (The state puts aside a fund that pays me a pension for as long as I or my wife live.)  I had a family to take care of. They went from one day saying there’s nothing wrong with me to saying I’m 100% disabled. I applied for social security (disability) twice and was denied. So I hired an attorney and finally a judge ruled in my favor to obtain social security.”

PH: Tell us about your feelings and activities during those years.’

Mike: “I was a totally different person. It’s very degrading to have someone help you get dressed every morning. I had to have someone drive me. I was still in my late 20s. You feel like you lost some of your manhood. I could no longer play basketball or softball. I could only hunt from a chair. The drugs change you. You get short tempered. The littlest things would upset me. I hollered at my kids, at my wife, at the dog. I took a whole bunch of steroids (prescribed by doctors). I was trim when I got hurt. I put on bulk. I was hard to get along with. Even with other people. I had such a quick trigger. Before that I was a happy person with a good job who could support his family. And I’d play golf every Saturday with a group of guys. All of sudden, that just came to an end.”

“People said, “What about taking up knitting or crocheting? I can see why my first marriage didn’t go as good as it could have. I was married to her for 24 years. We are still good friends. I’ve been with my second wife 20 years. I moved to her home town because I wanted to be somewhere where people don’t know me. You just get tired of talking about your health problems. Once people know, that’s all they want to talk about. We just started over. I found myself a new doctor. Luckily! It was a huge relief. When you have a lot of medical problems, a lot of doctors don’t want you for a patient. They like patients they can help cure. I was on pain meds. When I had first been on them, I had problems taking too much. I think I was trying to kill the other pain in my life. I was depressed. I felt terrible about myself. I didn’t feel I was taking care of my family. So when I took some more (pain meds), you just felt better, you know. Now, even though I take narcotics, I don’t get a high from any of them. They just help manage the pain. One of my fears is that the pain will get super bad. We tried other meds such as Neurontin, but they didn’t help.”

PH: The pain is not just from Mike’s back problems. The cancer causes a lot as well. The tumors in the liver bulge the liver capsule (outer membrane) and this is painful. The cancer is slow growing and more treatable than many, but not usually curable. Steve Jobs died from this same cancer.

Mike: “The pain goes all the way up to my right shoulder (referred pain from the liver metastases). Sometimes the tumor pain is very intense. Last week, the back pain was severe. The pain meds help both types of pain. I also take a lot of nausea medicine”

PH: What other things in your life keep you going?

Mike: “My wife. She’s the most up person. I was a very closed person. She makes you feel like it’s OK. I was too sick to go to a birthday party yesterday. I felt guilty about not going. She assured me it was OK to not have gone. We do a lot together. We camp. She does all the driving. Even if I was healthy, she’d do all the driving. We get to the outdoors. We’ve got grand kids.”

“Taking care of grandma (his mother-in-law)….easiest person in the world. I feel good about helping her. She asks for nothing. She is extremely happy. She has her own room. She likes the dogs….Emma, the yellow lab; and Sam, the Australian shepherd, and Gus, the golden retriever. My life is pretty simple.”

PH: Tell us about some of the difficulties you face.

Mike: “The biggest thing I had to learn is to let other people do things. That is the hardest thing. Even having someone change the oil.  I hire somebody to do the grass. I tried to work on a fence the other day. I got really sick and it screwed up the back pain worse. I had to find someone to do the work. It kinda drives me crazy. You can’t keep asking family to do things.”

“I hate to spend the money. I still fall down. I have learned to fall with an art. I tell everybody I can fall with the best of them. It’s like somebody stabbed me in the back. It takes me over 2 hours in the morning before I’m not so sick. I wake up a lot during the night; often from sweating. I take shots of Sandostatin (Octreotide) for the cancer. I’ve lowered the dose; now it’s every 3 weeks.”

PH: Octreotide is a hormone drug that suppresses the cancer cells’ growth and production of a chemical that causes the sweating and nausea.

Mike: “When I was diagnosed with the cancer, they told me I had about one year to live. Another doctor said maybe 5 years. I’ve been on the shots for 7 years. There’s so much scar tissue from the shots that 30% of the time the needle plugs and I have to get another one. They can only give them in the hips.

“My doctor now (Dr. Zafer Yildirim, Oncologist in PeaceHealth Medical Group); a neat guy; says “Prepare like you’re going to die tomorrow. Live like you’re going to live forever”. It took about 3-4 years to get to the point where I can do that. Christmas is an important marker for us each year. I’ve had way more than my wife and I ever planned on. So we just keep goin’. I think the experimental surgery they did on me has given me all this extra time. We’re going through a little fight right now (in regards to the Sandostatin shots). They changed the formula but didn’t tell anybody. People are complaining. I used to have 3-4 days of feeling more normal after them. Just like when you got here today, I was sweating a lot. I finally got a letter from the company this week. I don’t know what’s going to come out of that.”

PH: Do you have any opinion about what caused your cancer?

Mike: “Here’s my thoughts on it. You can take it for what it’s worth. I grew up in Great Falls, Montana. Hanford (nuclear plant in Washington state)  back in the 50s did a lot of releases (of radioactivity). A lot of that stuff came down in Montana. There is money for people with cancer that live in certain counties of Montana. Great Falls is not covered to this point. My Mom brought it up to me. I read some articles about it.”

PH: What have you learned about what matters to you in a health care provider?

Mike: “Best thing that can happen to you when you need health care is somebody to listen. I tell this to my friends. You’ve got to make a doctor understand how it’s affecting your life. We don’t let “grandma” go into the doctor by herself because she’s one of those persons that whatever they say, she doesn’t question. I think you need to ask questions. You need to be more proactive in your health care. I don’t think you should just take what they say. If you go to a doctor and they don’t seem like they really care of if they seem like they’re in a hurry, then I say, go find another doctor. Because you need somebody who really cares about what’s going on with you. Luckily, with my Medicare insurance, I can go to any doctor I want. It’s really important that you can talk to your doctor.

“The worst doctor I ever had was the surgeon who first operated on my back. Then I met the orthopedic doctor who taught me what to look for in a doctor. Every since him, I cannot think of a doctor I’ve had that I didn’t like; that I couldn’t talk to. I was careful about picking my doctors. I just won’t go to any doctor that someone sends me to. I will tell them I want an appointment to just talk to a new doctor first.

PH: How important is the ancillary staff?

Mike: “I think it’s very important. When they call you by your first name, it’s amazing how much better you feel. Twice, my wife brought paper work to a staff person who never seemed very happy; who didn’t seem to care. My wife had a very bad opinion of the girls who work in the office. But it wasn’t the girls; it was that one girl”.

PH: Mike has some final thoughts about his cancer doctor, Dr. Zafer Yildirim in PeaceHealth Medical Group; a nurse, his marriages; and his parents. He says he would NOT do his life differently if he could live it over again.

Mike: “I have a great cancer doc (Dr. Yildirim). He says I’m part of the family. He says you can just go to a major medical center if I want. I said I don’t want to go there. I want to stay here (small to medium sized town). He says there’s no complete explanation why I’ve lasted as long as I have. But he says there’s a higher authority than us. He said, don’t question it. One day he said, “Don’t let ’em cut on you anymore”. He’ll say, “This test doesn’t mean a whole lot”. He’ll tell me what matters and what doesn’t. He’s completely honest. He’s just a nice guy. He asked me to see a pain specialist, so I did because I know it helps him to care for me better. The pain doctor went through what I’m doing and taking and said, “You’re doing fine”.

“One of the nurses has the same birthday as I do. She was giving me a shot one day with a big needle. My wife was there and we were joking. She was getting ready to poke me with the needle. She said, “Oh, I live on a ranch. I’m used to giving these to cows. So this is no big deal.” The staff just makes you feel comfortable.”

“My first marriage was affected by my medical conditions, but we were 2 different people. I was ready to go into the police department when I was 21 (he married at 19).”

PH: She asked him not to because she had heard that all policemen cheat on their wives. She gave him an ultimatum that she would leave if he  became a policeman. That experience didn’t help his marriage although they stayed together another 22 years.

Mike: “We are still good friends. It worked out for the best. I met my wife. I wish I’d met her 20 years earlier. Everything turns out for the best. I don’t want to make it sound like I’ve gone through all this horrible medical stuff. It’s been over a long life. And it’s been stuff we’ve gotten through. In the last year I’ve lost about 55 pounds. I’m just not eating as much. I think it’s better for my back. Plus I don’t want to be an old fat fart. I do pay attention to my body.”

“Dad went to the war. They came through that era where people had work ethic and right and wrong. That’s where we got our philosophy. Mom, to this day, has a little green book to keep track of expenses. When I was young, she wouldn’t let me get out of paying off debts.”

“I just feel lucky to be here. When my mother-in-law and I say goodnight, we’ll say “See you in the morning” and the other will say, “Let’s hope so….it’ll be a good morning if we do”.

PH: Thank you, Mike.  And thank you, Cathy, for helping with the interview and reviewing this blog post before publishing.

Chronic Illness such as Lupus

lupus

LIKE GRIMMS’ FAIRY TALES

CREATURE IS BORN INSIDE HER

NOT EMBARRASSMENT

Lupus is an autoimmune disease. The immune system gets a little confused and senses a part of the body as if it is an invader such as a bacteria or virus. So it creates antibodies which cause “friendly fire” that damage some of the body’s own cellular proteins. 85% of victims are female.

The full name of lupus is Systemic (the whole body) Lupus (wolf) Erythematosus (Red). The often bright red facial rash is called a butterfly rash because of it’s shape. It occurs in less than half of lupus sufferers. Ulcerations on the face can occur as well. Many of the internal organs can be affected.

A 14th century physician thought the facial ulcerations looked like wolf bites. In that age of superstition, some people feared these victims were werewolves. It wasn’t enough to just be ill!

Lupus is not usually a curable disease. However it can be controlled with medications to partially suppress the immune system and keep the wolf at bay.

INTERVIEW

The interview for this posting is with Dr. Mark Thorson, a recently retired Internal Medicine (Internist) physician from a small to medium sized town in Southwest Washington. The care of patients with chronic illness is a very important aspect of an Internist’s job. Lupus is just such a chronic illness. The name Internist implies caring for people’s insides. However Internists evaluate and treat various skin conditions as well. The skin has been described as the largest organ of the body by some.

INFORMATION ABOUT HIS CAREER AND THE ROLES OF VARIOUS PROVIDERS OF HEALTH CARE

Dr. Thorson: “I’ve treated a lot of patients for chronic illness, such as Lupus. Some patients have been crippled by it and others have only small residual effects.”

He describes the roles of specialists, subspecialists and primary care. Internists are a type of specialist; caring for adults only. The name subspecialist is confusing because, in fact, they are really superspecialized; highly trained in specific areas of medicine. There are subspecialists in many medical fields including rheumatology; the subspecialty devoted to connective tissue diseases such as lupus and rheumatoid arthritis. He notes that subspecialists provide some primary care at times as well, especially cancer clinicians due to the patient being at their facility so much of the time during treatment. When conditions such as lupus are stable, then Dr. Thorson usually provides the primary and urgent care.

Dr. Thorson: “Most of my patients had chronic illnesses. Over half were 65 years of age or older. Their  chronic condition included diabetes, tobacco use, obesity, anxiety, depression, irritable bowel syndrome, and asthma, to name some of the more common ones. One can get depressed if you have a chronic illness.”

He feels that high blood oressure (hypertension) is so common and treatable that it usually shouldn’t be considered a chronic disease. He notes that some doctors now are specialists for only the elderly. They are called geriatricians or gerontologists. He notes that several have come and left his community. Most of the primary care providers such as internists, family doctors, nurse practitioners and physician assistants provide the care of the elderly in his town, as in most places. The field of gerontology as a subspecialty is relatively new.

HIS PHILOSOPHY

Dr. Thorson: “It takes a team to get the job done. The most important quality is to be a genuinely caring person; to have a heart of caring; to have a heart of servanthood. This isn’t a job. This is a profession; this is a calling. This is true for all medical providers. I’ve been blessed with excellent nurses. The home medical model is not tied together only by the electronic medical record, but by caring hearts.”

He describes the 3 overarching attributes of being a good health care provider. He calls them the 3 “A”s: Able, Amiable, and Available. He notes the importance of going the extra mile for patients on occasion to obtain optimal care for them; activities such as filling out forms to request medications requiring prior approval; or taking the time to encourage patients to consider treatment they are resistant to taking. He recalls an 80 something (a 20 something at the other end) finally accepting an antianxiety medication for a lifelong battle with anxiety. He told Dr. Thorson that made him feel “the best I’ve felt in my life”.

REWARDS OF BEING A DOCTOR

Dr. Thorson: “You get to know families. The old time family doctor had a better idea of what people were likely to get since he knew the family so well. One of the joys is to be able to learn all along the way….intellectual challenge. It’s a strategy to not allow oneself to get emotionally overburdened. You can care for someone and not get grief-stricken or depressed when they have problems. I rarely went to funerals when I was in practice. Now that I’m retired, I go more often to share in the family’s grief. It’s important to go to funerals. I think young people benefit from hearing the eulogy to find out what it means to live a good life. My patients have taught me a lot. I thought I knew everything when I first came to town. I had a few patients cut me down to size and teach me important lessons, such as humility and patience. When I retired, I was pleased that a number of my patients said I earned it…and told me they would miss me.”

RETIREMENT ACTIVITIES

Dr. Thorson: “I can be a safari guide to help former patients and friends negotiate the medical care system. I work one evening monthly at the local free medical clinic. It is wonderful. It’s nice not having to learn a new electronic record (the clinic still uses a paper chart). People in this community really care about those who have no insurance such as immigrants and unemployed. I’ve seen families of former patients there. I still keep up with the medical sciences. I set up quarterly meetings for the local medical staff to discuss clinical cases. We often review common conditions that presented in an unusual way that you should not ever forget or they had an unusual complication of a disease process that you really need to be anticipating.”

DIFFICULTIES OF BEING A DOCTOR

Dr. Thorson: “Some clinicians are overloaded with things that crowd out patient care.  There were not enough hours in the day and there were lots of things added on including record keeping which took me a lot of extra time. The EHR (electronic health record) has helped some but has not been the ultimate solution. Part of it was my problem but partly it’s due to the electronic medical record not having intelligence. None of these systems even have artificial intelligence, much less real intelligence. I believe there have been improvements in the electronic medical record but I don’t believe that overall it truly improves efficiency. Productivity drops 20-30% and never gets back to where it was before. Clicking a box isn’t nearly as important as doing what you’ve been doing or should have been doing all along to help the patient. As an example, with tobacco use, you try to find the right emotional hook to help the patient quit. Clicking a box that you did so doesn’t really add anything.”

The use of measurements of how well clinicians provide quality care is called quality metrics. A recent survey of primary care physicians reported in AAFP News September 8th, 2015 noted that over half of them feel the increased emphasis on quality metrics has had a negative impact on quality of care. 47% said new trends in health care have made them consider an earlier retirement. About half felt that Information Technology has not overall contributed positively to patient care.

Dr. Thorson: “Staff turnover is maybe a problem. But clinicians (anyone providing patient care) often only stay in our community for 3-5 years. Our community is underserved. It is a mission field in the sense of increased socioeconomic needs. The economic base of our community has been damaged. Many of the good jobs have left. Many who could move elsewhere have left. Many of those who have stayed don’t have the skills to market themselves. So you have a lot of unemployment. The statistics don’t show the situation. Drugs cost the community; with family problems; child neglect; poor educational encouragement by these families for their children; poor prenatal care due to alcohol or drugs; more learning disabilities; more special needs kids. Rural America has lost its industrial base. If you are a man and can’t earn a living, I think that’s depressing….in our culture. Though there are a lot of single parents, they often still are highly involved in the children’s growth and development.”

FURTHER BARRIERS TO OPTIMAL HEALTH IN OUR SOCIETY

Dr. Thorson: “There is a problem of affordability. The middle class is losing affordable medical insurance. The working families may have deductibles in excess of $5000 per year range now. Even though both parents work, they can’t access adequate health care due to the high costs. If you are retired on Medicare or chronically on welfare, you can often get decent health care. It has a lot to do with lobbying power. Such as the AARP lobby for the Medicare population. If a child has a cold, the family is more likely to ride it out and get advice from the telephone advice nurse. It might cost $1000-$2000 for an emergency room visit for a stomach ache…..And these are the working people….They are paying the taxes….They are being punished. I worry about a society that tells the average working people that you are going to carry a disproportionate share of the load.”

COST TRANSPARENCY AND CASH

Dr. Thorson: “Even as a patient myself I couldn’t find out what some treatments cost. This is the only industry where the cash paying customer pays the highest price. Most businesses will give a discount for cash. But not in the medical care system. This is wrong. Doctors need to have knowledge of costs so they can balance in their judgment the wise use of resources. The ACA (Affordable Care Act) has not solved all our health care system problems, though it is rightfully providing medical care access to the poor and uninsured.  I mentioned the negative effects on the middle class. Another deficiency of the ACA is a lack of a tort reform due to the power of the trial lawyer lobby. The ACA term is an oxymoron. It’s obviously not affordable health care (for many). Now we are finding out the true cost of the ACA. If we had known earlier, the law would have been modified.”

UNHEALTHY LIFESTYLE CHOICES BY PATIENTS

Dr. Thorson: “People will always do that….That’s human nature. Medical care givers need to help motivate people who are trapped by life circumstances such as a bad family situation, unhealthy habits, and drug use. Perhaps the medical home model will help especially if the patient is motivated to get better. People get trapped in their own bodies. Some get electric scooters. I have tried to help patients get bariatric surgery (obesity surgery) but it just cost too much and insurance would rarely cover the surgery. Some went to Mexico and had it done there. Probably the best thing we are doing for obesity is the lower Columbia School Garden  program that teaches children about growing food and healthy food preparation. Benefits will take a generation. For people with self-inflicted illness such as Methamphetamine addiction who develop permanent psychosis, long term treatment with medication costs $400-$600 monthly. Drug addiction has a tragic cost to society both socially and financially, but medical treatment is less costly than imprisonment.”

LIVING IN A SMALLER COMMUNITY IN AMERICA

Dr. Thorson: “It’s harder to attract professionals to come to our community due to contracting support for schools. You only need one child to get caught up in the drug culture and you’ll wish you hadn’t moved here. But it can happen in rich school districts. It’s more pronounced here. I still think it’s a wonderful place to live; with a lot of recreational activities, and a lot of wonderful people who have stayed here. If you to want to make it a better place, you can do it. Organizations include a hospital, churches, recreational groups, clubs and civic organizations, caring organizations providing social services, Habitat for Humanity, and various youth groups to name some. There’s a lot of need but there’s also a lot of opportunity. I have no personal interest in entering into politics but I would like to occasionally write a letter to the newspaper editor. In my medical practice, people didn’t usually want to know my political beliefs, especially until they knew I really cared about their well-being.”

FURTHER COMMENTS ABOUT SOME DILEMMAS OF HEALTH CARE COSTS AND ACCESS TO CARE

Dr. Thorson: “When the workers at a local mill went on strike, they immediately lost their HMO insurance, since the company will not pay the health care insurance premium during a strike. In the past I would still see my patients when they were on strike. I don’t know how the billing department handled it. I wrote off a lot of bills in situations like that. If everyone in America were in an HMO, you’d discover what the true costs of health care are. When only a percentage of people are in HMO’s, it makes the HMO look very efficient. There has been a flood of new patients into the health care system now that the poor have better access to health care insurance through the ACA. This is creating problems of access as well.”

The “flood of patients” Dr. Thorson refers to is stressing the health care system by making it harder for newly insured patients to find a health care provider. There’s irony in the notion that now that they have insurance, there’s no one available to care for them. Fortunately it’s not to that point yet. But it is causing some states and municipalities to scramble to find solutions.

SUMMARY

Some people say our health care system is a house of cards waiting to fall apart. Others say we have the best health care on earth. The truth seems to include aspects of both views. What do you observe about our health care system that you like? That you don’t like? What are the barriers to you being as healthy as you think you should be?

Thank you, Dr. Thorson