Monday, November 16, 2009

Where's the Best City to Die?

When I ask patients about their greatest hopes or fears at the end of life I often get a comment like this, "Well, my biggest fear is that no one will understand what I want and that I'll end up being a burden to my family. I'm just afraid that the people caring for me might put me through hopeless painful attempts to keep me alive and that I won't have any say."

As we go through the discussion, often people haven't even begun to have conversations with their families and loved ones about death. It often takes a scare or serious illness to raise the topic, but then we might not be mentally competent. Even people who've had the discussions might not have completed a Durable Power of Attorney for Health Care or a Living Will. Or if they have done these, they are at times filed away in a hard to access spot and may not have been reviewed for years. Electronic records and national living will registries have now made it possible for some medical systems and individuals to retrieve important information like Living Wills 24/7.

In general medical system defaults to treatment when it comes to saving lives. When 911 is called or you present to an emergency room, if there are no instructions to the contrary (such as a POLST form) and it's very urgent, the medics will understandably and appropriately initiate treatment. But this is similar to having surgery without understanding the risks or benefits. When we have a cancer diagnosis, are very elderly, or have a combination of serious chronic conditions, we may want to ask for limitations in "heroic care". Hence a program like Respecting Choices in La Crosse Wisconsin which is actively reaching out and helping people complete advance directives.

The Gunderson Clinic in La Crosse has shown us a powerful way to bring end of life discussions to a community in such an effective way that 96% of all deaths there have advance directives completed. The main reason for the directives is to respect a patient's wishes. The ethical principles involved are to respect a person's autonomy and to do no harm. There have been significant expenses incurred by the hospital to keep this program operating. Even so, they funded the program because it was the right thing to do.

"At Gundersen Lutheran, the cost of care for someone in the last two years of life is about $18,000. The national average is close to $26,000. At one hospital in New York City, it's more than $75,000."

This is not rationing. There aren't (and never were) proposals for "death panels". But there is a proposal —"it's in the health bill passed by the House of Representatives — that would pay for the kind of periodic and continued end-of-life discussions with patients that are routine in La Crosse. Gundersen Lutheran is pushing for it."

It's encouraging that the medical professions, the public, and now the politicians are seriously engaging in this area. La Crosse is a powerful model leading the way.

Thursday, November 12, 2009

Who's in Control?

Vonnie was new to my practice. She came in, looked me in the eye and said, "I'm here because I have sarcoidosis. I've looked you up in the Directory of Medical Specialists, talked to friends at the University, and have decided that I want you to be my doctor. Vonnie, I quickly surmised, would be fun but maybe a challenge to care for.

She taught medical terminology to medical assistants so knew all about pulmonary functions, prednisone, rales, wheezes and all the organs which could be affected by her disease. I was just a young pulmonologist at that time and tried to assert some control or at least set some boundaries. We negotiated what tests needed to be done. She was fine with that, but treatment was another issue.

Her disease was serious and progressive. Sarcoidosis was initially named for its red lumpy skin lesions, the name literally meaning "flesh-like" (sarcasm on the other hand literally means "cutting through the flesh"). Small clusters of lymphocytes can multiply and congregate in literally any organ in the body: particularly lungs, liver, eyes, and skin. Researchers have spent a lifetime looking for the cause such as an infectious agent or some kind of environmental exposure. Lots of theories have led up blind alleys. Most patients with sarcoidosis have a benign course often with complete spontaneous resolution, but then there are some like Vonnie, where it is relentlessly progressing.

Vonnie hated the prednisone side effects. The common ones of weight gain, puffiness, bruising, etc. she could put up with, but the mental effects were disabling. She felt spacey, irritable, and just not herself. It was straining family relationships which were all important to her.

Over time, I learned to listen to Vonnie. She reminded me, "Dr. deMaine, you do remember Francis Peabody's dictum don't you."

I nodded.

"The secret of caring for the patient is to care for the patient."

In repartee I said, Vonnie do you remember what the root word of "doctor" means?

"Of course" she smiled "docere 'to teach'. You're my teacher aren't you?"

As things worsened Vonnie's family rallied. Her strong Catholic faith helped her to persevere. She smiled and said, "We Catholics understand suffering!" The end came quickly perhaps from a pulmonary embolism. The family described her wake to me. Vonnie had it all planned: the music, the poems, the silver, china and crystal - and made a wish that all would raise a glass (or two) and wish her well in her new adventure with God.

A few days after her death, a note from Vonnie arrived in my in-box: "Dear Doctor deMaine, Because it is the aim of the physician to heal and to extend life, it must have been difficult for you to let go and allow me to reject the steroids. Yet without the anxiety produced by the prednisone, my spirit is healed. I am 'myself' again. (I did not ask for a personal healing at Lourdes, only that the cause and cure of sarcoidosis be found.) As a result, I am able to embrace life and to live it with a great degree of peace. My children now know me as I am and can learn that death is a companion, not a tyrant. In your own inimitable way, you've give me the kindest of care - a mirror of love with which God tends me. Thanks and prayers, Vonnie."

Comment: One evening about 9 years ago, I was giving a talk to a patient group about sleep apnea. In the middle of the talk, I crossed my arms and felt a very large firm rubbery non-tender lymph node near my elbow. This alarmed me, but I was able to limp through the rest of the talk. Examining myself at home later, I found enlarged lymph nodes all over my body. Immediately I assumed the worst, non-hodgkins lymphoma (cancer of the lymph system). I called the surgeon on call the following day, a Friday, and he took out a lymph node for diagnosis that afternoon. I waited all weekend and then got the smiling message from the surgeon: "You dodged a bullet, it's sarcoidosis".

Mine was different than Vonnie's in that it involved the skin and eyes and not much the lungs. A newer use of the "steroid sparing" drug, methotrexate, worked beautifully for me making me disease free. I wonder if Vonnie is smiling down at me and thinking, "See, doctor and patient, there really isn't much difference. We're a team. D
o you remember my prayers at Lourdes?"

Tuesday, November 10, 2009

Where to Die?

Speaking recently at a class for patients called "Your Life Your Choices", I stated that most Americans prefer to die at home. Bob raised his hand and said, "Not me!" He was in the minority ten percent. He adamantly didn't want to die at home. I met with him later to learn his story.

It all started when he had trouble swallowing. Liquids went down fine, but a piece of meat seemed to get stuck. The GI specialist recommended an endoscopy to look at the esophagus. Bob reluctantly agreed if he could be sedated enough. The procedure went smoothly, but the pictures showed a rough angry narrowed area which restricted the passage. The diagnosis proven by biopsy was cancer. This was three years ago.

There was the subsequent surgery where a large portion of the esophagus was removed and a portion of his colon inserted to bridge the gap. It worked fine, but the cancer came back with a vengeance. Chemotherapy and radiation therapy seemed to help but his treatment options had been exhausted. The cancer was running its course.

Bob was ninety now but looked much younger. He had to force himself to eat and was loosing weight. A hacking cough had developed because of intermittent aspiration of liquids into his lungs. He knew that pneumonia was around the corner and that his time was limited.

But Bob didn't want to die at home, "Listen doc, I just don't want to have my wife and children watch me die. It's too much of a burden for them. Also, no one wants to buy a house where someone just died."

Bob was now enrolled with Hospice which, in his health plan, was home focused. He loved the nurses, and they had agreed to move him to an inpatient unit at the end though he was still insecure about that actually happening. He had standing orders in a POLST form (Physician Orders for Life Sustaining Treatment) which both he and his doctor had signed. He didn't want CPR but he did want aggressive management of pain and shortness of breath. He was ambivalent about fluids but didn't want a feeding tube. He was worried if he died suddenly when away from the house that Medic I would be called and CPR attempted. To deal with that his wife copied the POLST form and carried it with them whenever out of the house. Hospice continues to be his lifeline and gives him a sense of control. He came up to me after class and thanked me for the review, but mainly for listening and validating his wishes about not dying at home.

Comment: Although I think I would prefer to die at home, Bob's preference was fine and needed to be respected. Bill Moyer has a PBS series on dying called "In Our Own Terms" . In one of the stories, a doctor with esophageal cancer said, "Dying without Hospice care would be like having surgery without anesthesia."

In contrast in the 1960's when I was in medical school at the University of Pennsylvania, we only whispered about death and dying. We were lectured by an eminent surgeon, "Students, never tell a patient that they have cancer. Talk to the family and they will decide what to do." Additionally, I vividly recall the Chief of Surgery at the hospital (for whom a pavilion is now named). I saw patients with him in his private clinic. An elderly woman was referred to him with a far advanced neglected fungating breast cancer which was obviously wide spread. He said to her disingenuously as he held her hand, "My dear, thank goodness you got to me in time."

Fortunately these paternalistic approaches are no longer used or taught, thanks to true pioneer born in 1929. Elizabeth Kubler-Ross, MD , a Swiss psychiatrist taught us about dying in her landmark book "On Death and Dying.". Her work led to the hospice movement and understanding the stages of grief.

Thanks to these dramatic improvements in patient care, I'm hopeful that Bob can feel peaceful and cared for at the end which isn't far away.

The funeral as we know it is becoming a relic — just in time for a death boom

By   Karen Heller April 15 Ed note: Funerals are changing in ways that will bring culture shock and a shake of the head of s...