Sunday, February 27, 2011
For some "the conversation" is dreaded, because hope is equated to science. But physicians need a broader education, and a realization that most people have Hope that is based upon a sense of being connected, and cared about, and that runs on faith.
Dr. Lucille Marchand, a mentor to family physicians and palliative physicians at the University of Wisconsin School of Medicine, phrased it this way in the Summer 2010 issue of the AAHPM Bulletin, "Hope is not an outcome, it is the process of living fully."
As a prelude to the conversation I always sit down, and I tend to take off the "white coat." I convey as much as I can, simply by not being rushed, that as a fellow human being "I care."
I ask more questions and do more listening - and very often I find that patients gift me with surprising wisdom.
In any case - "the conversation" is not always so difficult, and this weekend - I had a nicer one.
Carl is an 84 year old man who entered a hospital 10 months ago, he later said he "didn't feel well so he went to the hospital." Nothing was found (as so often happens since nearly 50% of patients with small strokes have CT scans that do not show the strokes, especially in the first ew days). He was agitated and hard to manage and was felt to have irreversible dementia and was placed on a high dose of an "atypical anti-psychotic" class medication. For patients with agitated dementia, it remains a serious problem, since these medications are not indicated for long term usage, but there are few options pharmacologically for safely and effectively managing agitated dementia patients (why not use non-pharmacologic methods one might well ask - a very good question)
I decided to slowly take the risk of tapering Carl off his medication. Rapid dose reductions can cause problems as well. For months Carl appeared as he had been labeled by the hospital - simply demented and near the end of life, listless, confused, mumbling and totally dependent. Slowly he began to be a little more alert, but as we continued to reduce the medication - a startling event happened this weekend, Carl really woke up!
He wheeled his wheelchair over to me as I came onto his unit, and said to me, "your the doctor aren't you. What day is this? What month is this? How long have I been asleep? Where is my family and do they know where I am?"
I sat down and talked with Carl for a long time, and explained what had happened, and he told me about what his life used to be like, what work he had done (a very responsible job).
And then I had to have "the conversation." I called his family. Only this time - it was a "good conversation." "You may have noticed a change in your dad, " I said." "Well - we noticed something last week - my daughter wouldn't enjoy visiting her grandpa, but last weekend he was more alert." And I explained how I had been slowly tapering him off his medication - "I can't guarantee how long this will be for," I had to add. "But it would be great if you could come over today, he is very alert and really wants to see you."
The thing is - with an approach of palliative care, "the conversation" is often one filled with hope. We accept we cannot cure yet we continue to care, and we give hope simply by connecting and caring. And sometimes, when conventional treatments cannot actually cure, patients are better off without them - sometimes using futile medications for "hope" doesn't make sense scientifically or humanistically.
Dr Lucille Marchand wrote in her article that physicians "don't take hope way by running out of conventional, curative treatment options; rather, we discourage hopefulness by not being present and listening to what our patients truly need from us."
I agree. And the fact that within conventional medicine, there is increasing recognition of the import role a physician can play in nurturing hope elevates the spirit. Palliative care is a specialty that brings conventional and complementary methods together by its very essence, and makes a more human model. It makes "the conversation" a little easier. It enriches all our lives.
Saturday, February 26, 2011
Discussions about "energy" in health care, as with the Eastern models, didn't make sense in terms of Newtonian-Cartesian science. And that all held together until Einstein came along, and after him, current physicists with Quantum theory, Gill Edwards writes in "Conscious Medicine" (a marvelous book well worth reading) "as physicists looked at tinier and tinier particles o what makes up our physical reality, they concluded that there simply isn't any solid stuff. There is only energy, or in quantum physics terms "waves of probability."
While I do not agree or endorse all of Ms Gill's statements about "conventional medicine," what is important in her argument is that complementary approaches cannot simply be invalidated because they do not fit someone's view of the Newtonian-Cartesian models (which are useful but no longer accurate as we assess sub atoic physics and the essence of things.
The NIH suggested that both conventional and complementary techniques should be viewed in light of an evidence based approach - and often complementary techniques are lower cost, lower side effects, and "do no harm."
Some techniques used routinely in conventional medicine can be high cost high risk with limited proof of efficacy, but we can get very caught up in the mantra of "fighting for someone." Using chemotherapy for a cancer that is sensitive to the agent, makes sense, but continuing a toxic sustance when it is clearly not helping may be sapping the body of its own natural defenses - using anti psychotics in some circumstances can effectively save peoples lives but in other circumstances they are being used where they are frankly "black boxed" by the FDA as not approved for use due to potential harm and lack of effectiveness.
For anyone in medicine humility is a valuable commodity - I can remember in my conventional medical school training, one wise physician pointed out to me that we get a small percentage of patients better through our interventions, most would heal anyway naturally, but that we injure some as well in our treatment. I always held the "do no harm" mandate to be important. Our professor of Public Health in medical school pointed out that changes in life expectancy tables correlated more to infectious disease limiting measures (such as control of sewage and quarantine of certain illnesses) than advances in medications and surgical techniques.
Europe seems to utilize less aggressive surgical approaches than we have as standards in the US (in act an element of our health debate is the argument of hypothetical "waiting lists" in Europe, when in fact, age adjusted most European countries have lower mortality figues and longer life expectancies that in the US).
And so - particularly for those patients who have diseases that are viewed as "incureable" by conventional medicine, asking "energy based" questions seems to make sense. Sitting down with a patient and asking "what do you believe happens with your spirit or consciousness when your body dies" expresses - most importantly - a sense of humility, and a sense of a willingness to listen, and a genuine caring for the person we are talking with. Our acceptance of their faith or belief set is supportive of them - and it allows for acknowledging our inability to "cure" someone, without taking away their own intrinsic sense of hope - separating out our lack of skill to cure from their future - not saying "you are going to die" but asking them what journey they perceive themselves to be on.
Patients and families are almost always positive in their responses. Some simply appreciate a doctor sitting down and taking the time to talk with them - and demonstrating the one thing we can clearly do when we cannot cure, and that is care. More importantly, patients have a natural tendency to hope, if only we do not crush that hope or invalidate it, in our need to be "scientific."Rarely - I find an atheist, and it is never my job to convince or convert - but every atheist I have met has been more than willing to tell a listening doctor how he/she feels, and more than happy to review his/her life experiences with someone who cares.
When I came back to work on my in patient hospice unit, after my week at the AAHPM meeting, two patient experiences reminded me what my job was all about.
Sharon is 69, she was declining and suffering from severe pain and emacia. We had controlled her pain on our unit - she was hearing impaired, but was very alert to a patient listener. When I asked my one question, here were her responses - we just listened. "I don't know what to expect and I guess that's why you have anxiety, when you don't know what to expect. You're not going to be here on earth anymore, you're going to be with God. I'm not worried about that, I'm worried about what's in between - and everyone else suffering on account of me."
Mike was 80. He suffered from renal failure and was not eating, he was unconscious. A family member was present and in vigil. We asked her what she thought her loved one believed was happening to his spirit. She stopped crying to think about that question. "He is hard of hearing and his speach is impaired. He had no formal education. He was ignorant really in many ways. He never really expressed himself on heaven, he would have had a hard time expressing himself about that. I don't know how to explain it - he was just there - just him. He and Mom went to church almost every Sunday, though, for 50 years till she died. Then he lost his house and car. He lived an uneventful life, he was just there. He just lived his life, he never hurt anyone or did anything mean to anyone - sometimes he would just mow peoples lawn in the neighborhood without even charging them."
Sharon's pain was controlled on our unit, and went home to spend additional time with her family. Mike made transition free of pain. In both cases, their presence enriched us because we took the time to listen to the spirit that connects us all - spirit that resides in each human being.
In the best of worlds, we will use conventional medicine wisely and scientifically, we will use penicillin (or a more modern antibiotic) to save lives, and we will reduce cardiac risks and forstall cancer as best we can. We will avoid using the modern equivalent of "leeches" and be open to complementary medicine, or forms that Gill Edwards calls "conscious medicine" - to encourage the natural healing processes.
And most importantly we will face each day with humility, and continue to care for fellow human beings even when we can't cure them. Hopefully acts of compassion will make a difference in a world that so badly needs positive energy.