Tuesday, January 26, 2010
Debunking Hospice Misperceptions.
Over the last 25 years, the number of Americans turning to hospice for end-of-life care has climbed dramatically -- from 25,000 in 1982 to 1.45 million in 2008, as more and more people choose to spend their final days in the comfort of home or a patient facility with a home-like environment rather than in a hospital pursuing aggressive treatments.
During the last decade, Medicare reimbursements for hospice have also risen, allowing more hospices to open without relying on fundraising for survival, says Christy Whitney, chief executive of Hospice and Palliative Care of Western Colorado in Grand Junction.
The decision to stop curative treatment and enter hospice is never easy, and it comes at a stressful time. Even once the decision is made, arranging for hospice care requires the acknowledgment of unpleasant realities, which doctors themselves may hesitate to discuss. This reluctance can put the onus on patients and families to initiate difficult conversations about end-of-life care.
The Fallacy of Hospital Ratings.
New research published in the January issue of the Journal of the American College of Surgeons finds that while popular hospital rating systems can help identify high-quality hospitals for cardiovascular operations, patients can achieve similar outcomes by seeking care at high-volume hospitals closer to home.Hospital quality ratings have become a source of bragging rights for many hospitals, and they receive substantial attention from both the public and media. Two of the most recognized ratings are the U.S. News and World Report’s “America’s Best Hospitals” and HealthGrades’ “America’s 50 Best Hospitals.” Although patients and caregivers increasingly use these quality ratings to choose hospitals, the relationship between ratings and outcomes remains unclear.This research is the first of its kind that addresses the important question of whether surgical outcomes at the highly rated hospitals are better than surgical outcomes at other hospitals in the United States.“Both the U.S. News and World Report and HealthGrades quality rating systems are frequently used for hospital marketing. Our study shows that current hospital ratings systems are no better in judging the quality of hospitals than are procedural volumes,” according to Nicholas Osborne, M.D., Robert Wood Johnson Foundation Clinical Scholar at the University of Michigan Medical School.
Hedging the Word Murder for the Sake of Profession's Power and Pride.
MacDoctor writes at his site about the two verdicts recently reached in Britain on mercy killing cases, questioning both decisions. Then he proceeds to confuse the hell out of his readers on absolutes like suffering, murder and end of life choice. Like most conservative doctors who claim to know just what they're talking about when it comes to "euthanasia" but refuse to abandon the unreasonable absolutes they have been taught - he comes out in support of pain:
The first verdict troubles me greatly. I have enormous sympathy for this lady and for her daughter. Multiple Sclerosis is a truly awful disease that causes progressive debilitation, weakness and chronic pain in the patient. But, as I have argued in a number of recent posts on Euthanasia, the person requesting assisted suicide is highly likely to be depressed and therefore in need of treatment, not death.
Ok, so you're body is debilitated by MS and death is impending without a doubt. Maybe you're given less than six months to live (as Death with Dignity requires in the US). A little depressed, maybe? You've accepted that death is coming, caused by the incurable disease, and that surely tremendous pain and suffering will precede it. What does MacDoctor recommend? Cheer up! Because unless you're living with (unrealistic) hope that you will happily go on, you must be depressed - and that's bad. (No wonder doctor's fail to give their patient's direct, scientific, accurate diagnoses.)
Strange, I feel the opposite. When you know more about the effects of a disease, the particular disabilities visited on a patient, the general diagnosis, the amount of love and time and years the family have invested in that patient's care, when you let go of the myth of hippocratic ethics (MacDoctor fails to say what he means here, though I suspect the "first do no harm" stuff that is loosely taken from the original oath, written in 4 BC and seldom used in medical schools, an ethics I don't mean to belittle but would seriously like to have someone clearly - historically, technically - define), and when aid in dying is offered via the strict supervision of two doctors - the issue is no longer for the mother or parent or loved one to make. It is up to the patient. Is it not this necessary leadership to the Styx, this advisement and direction, this authority and wisdom that families look to doctors for?! Where is the authority in the face of suffering? Why have doctors again and again throughout the ages chosen to abandon patients at the end of life, in their suffering?
The idea of assisted suicide should then be anathema to any doctor who follows hippocratic ethics. It is also highly unlikely that a parent could have the skill set to exclude a depressive illness and retain sufficient composure to make a reasoned clinical judgement on the issue. I most certainly could not do it. I therefore think the idea of “assisted suicide” is made plausible in the legal system, and in the eyes of the public, only because they do not understand the complexities of the situation.
Ok, let's substitute the myth of mercy killing for the myth of relief - or the futile search for one? Or better yet, for the myth of redemptive suffering! Why? Because "giving up hope" - a euphemism for facing death - is bad, and it signals depression? As MacDoctor says, it shows lack of respect for life?! In neither of the cases noted here was the mother motivated by the vagaries of a particularly bad day. They spent years, decades even, caring with the greatest of patience for their dear children - always working and caring with hope. The women acted because they ultimately saw no future for their child - nor perhaps for themselves - and in one case because the child begged repeatedly for release. As Jeff Sharlet has said about the death of his mother:
We maintain a myth of “mercy” killing, purely because we do not see the alternatives that may, in fact, make life bearable and even sweet for a patient again. Granted, these alternatives may not actually exist. But they need to be sought for in a reasoned and considered manner, not in the despair of a particularly bad day.
Shortly before ! she died, she invited people of different faiths -- Buddhism, Evangelical Christianity, Catholicism -- to pray with her at the house. These people spoke of salvation -- of preparing for the next world, for life after death. But his mother, Sharlet said, wanted to pray for deliverance."She would say, 'I want to be delivered from my death.' ... That always stayed with me. That whole idea of deliverance versus salvation -- it's the most interesting dilemma you could have."
So the alternative to "mercy killing" is to allow sanctioned suffering as the default treatment? Doctors can't do anything about end of life suffering often. But by all means, let's not change the laws to address more humane ways of treating dying patients. That would "devalue life"? What the hell does this sort of insensitivity mean coming from a doctor - indeed the medical profession? Rather maybe than ask doctors to take a stand against senseless suffering, the profession would prefer to enjoy their quiet, noble, paternalistic position by inflicting futile care and prolonged death on the suffering? The church and their pride have convinced them that they are the keepers of pain. Rather than break down ideas of murder and mercy killing for those in pain, let's continue to sanction it for an abstract idea like "sanctity" and "life."
I am acutely conscious that sometimes my colleagues and I are singularly useless in assisting suffering patients to seek other solutions besides death. This does not make murder right. Nor does it mean that “mercy killing” or ”assisted suicide” is somehow one step down from murder. By all means let us show mercy to those who resort to murder for reasons that are both understandable and non-malignant. But let us not dress it up as anything less than the “killing of another person , not for the purpose of self defense” – murder in anyone’s book. To do anything else is to devalue life.
The Examined End of Life.
The stories in "Last Acts" are unexpected and often quirky. Casarett's taxonomy includes Lacy, who was desperate to write a novel and leave it as her legacy, and Ladislaw, who wanted only to enroll in a clinical trial so his illness could be useful. And there is Jerry, a hospital employee "widely known for a combination of laziness and boorish behavior that made him widely feared and universally hated," whose refusal to apologize, even when seriously ill, prompts an examination of why the dying may or may not seek to make amends.
At times, the team of hospice experts are shocked at what seems selfish or irresponsible or unappealing behavior by the patients. But in fact, this is a big part of Casarett's point: that our collective sense of the "good" death can prevent us from seeing the individual realities of people's lives. It's a lesson he learns as a doctor, over and over, delineating the stubbornly individual imperatives that drive people who know they are close to death.
Biro, on the other hand, sees a unifying experience in the complexity of pain. In his erudite and ambitious book, he writes about the ways that artists, poets and novelists have described pain; he considers physical pain and psychological pain and argues that the isolation that comes with pain, especially when it cannot be described, contributes to the agony. He invokes philosophical reflections on pain by Elaine Scarry and Susan Sontag, along with personal accounts by writers ranging from Fanny Burney, who underwent surgery for breast cancer in the days before anesthesia, to Virginia Woolf and William Styron on illness and depression, to James Joyce describing Stephen Dedalus's ear infection to fictional characters suffering and dying beside Mount Kilimanjaro (Hemingway) or in the wilds of the far north (Jack London). "The Language of Pain" investigates not one single vocabulary but a complex syntax of suffering.
Klass closes the review with this:
Both books draw strength from this, from the sense that these are real, everyday situations that nevertheless require responses outside the traditional pharmacopeia. Both these books resonate not only with the common certainties of pain and death but also with the infinite individuality of human life and human voice.