http://www.jhartfound.org/blog/?p=2765 Can Good Care Produce Bad Health? Amy Berman Tuesday, January 11, 2011 15:19 For those of you who haven’t yet heard, I have recently been diagnosed with Stage IV inflammatory breast cancer. This rare form of breast cancer is known for its rapid spread. True to form, it has metastasized to my spine. This means my time is limited. As a nurse, I knew it from the moment I saw a reddened spot on my breast and recognized it for what it was. My recent journey through the health care system has been eye-opening. In only a few months, I have witnessed the remarkable capabilities and the stunning shortcomings of our health care system firsthand. I am writing here because in the time I have left, I hope my story and my journey can help illustrate why some of the reforms that my colleagues and I at the John A. Hartford Foundation, as well as many others, have championed are so important. © iStockphoto.com/belterz At the cancer’s earliest appearance, I consulted with a well-regarded oncologist in New York. After the tests were done she regretfully informed me that my disease was not curable. Because my cancer is hormone-receptor-positive, she recommended an evidence-based course of medications aimed at slowing the progression of the disease. Before I committed to this course of care, I wanted to get a second opinion. I secured an appointment with the pre-eminent researcher/clinician in the field of inflammatory breast cancer, at a top medical institution in Philadelphia. The building was beautiful, the staff attentive. They even assigned a nurse, whom they assured would follow me throughout my course of care. I had no doubt that the care would be top-notch. Everything changed when my mother and I sat down with the physician. He never asked about my goals for care. He recommended an aggressive approach of chemotherapy, radiation, mastectomy, and more aggressive chemotherapy. My doctor back in New York had said this was the standard, evidence-based protocol for patients in Stage IIIB, whose cancer had only spread locally. But since I am in Stage IV she said I wouldn’t get the benefit of this aggressive, curative approach. “All of my patients use this protocol,” he said. I was shocked. “Does this mean I could get better?” I asked. “No, this is not a cure.” he answered. “But if you respond to the treatment, you might live longer, although there are no guarantees.” My goals are to maximize my quality of life so I can live, work, and enjoy my family with the least pain and the most function. Would I undergo a year or more of grueling, debilitating treatment only to live with spinal fractures if the cancer progressed? Would the treatment strip me of the quality of life I enjoy now? I wouldn’t be cured by the treatment. Would I get the possibility of quantity and no quality? I pressed him. “Why do the mastectomy?” I asked, puzzled. “The cancer has already spread to my spine. You can’t remove it.” His brow furrowed. “Well, you don’t want to look at the cancer, do you?” He made it sound like cosmetic surgery. Considering that a total mastectomy includes months of pain and rehabilitation, I thought that worrying about the view was secondary. Right now, I feel fine. I can work. I am pain free. Did I want to trade that for a slim chance of a little extra time (no guarantees, of course)? Would they be years of living, or years of suffering? “But what about the side effects of radiation?” I asked. “I’ve heard they are terrible.” He frowned and seemed annoyed by my questions. “My patients don’t complain to me about it,” he replied. Inwardly, I shook my head. Of course his patients never complained to him. Most of them were probably unaware that other, less aggressive treatments were viable options for patients with this stage of disease. To me, there were real drawbacks. Undergo aggressive therapy that might buy me a longer life…at what cost? I might never recover my health for the limited period of time I might have following the aggressive treatment. This doctor, top in his field, was reflecting the bias of our medical system towards focusing only on survival. He was focused only on quantity and forgot about quality. The patient’s goals and desires, hopes and fears, were not part of the equation. He was practicing one-size-fits-all medicine that was not going to be right for me, even though scientific studies showed it was statistically more likely to lengthen life. His lack of concern for my focus on quality versus quantity of life reminded me of how so many older Americans are treated at the end of life, shuttled in and out of hospitals and hooked up to countless machines to keep them alive when all they want is to manage pain and symptoms and to spend their final days at home, with their loved ones. Based on a perverse set of metrics, the Philadelphia oncologist was offering technically the “best” care America had to offer. Yet this good care was not best for me. It wouldn’t give me health. Instead, it might take away what health I had. It doesn’t matter if care is cutting-edge and technologically advanced; if it doesn’t take the patient’s goals into account, it may not be worth doing. I returned to my original oncologist. I was determined not only to choose treatment that would maximize the healthy time I had remaining, but also to use that time to call on our health care institutions and professionals to make a real commitment to listening to their patients. In the health policy field, we call this patient-centered care. As a nurse and a senior program officer at a health care foundation, I understood my disease and my health care options well enough to make an informed decision about my treatment. What about the millions of older Americans facing a terminal illness or chronic disease? How can they possibly stand up to the juggernaut of our health system and say, “No. I want care that focuses on my goals, care that is centered on me.” We need to make it easier for everyone to obtain care that fits their health care goals. How can we change the system and the measurement of quality to place the patient at the center? I call on everyone involved in health care practice and reform efforts to give serious thought about how we can reorient our health care system toward patient-centered care.
Wednesday, January 12, 2011
Tuesday, January 11, 2011
Ethics: When the Patient and Family Members Disagree | Pallium India
credit: mynameisharsha
An article by Dr Robert L Fine from Dallas, Texas, USA in the Journal of Pain and Symptom Management (Vol 40, No.4, October 2010) highlights the importance of patient-centered care.
He asks, what would you do when the patient who has gone through dialysis for many years, at the end of his life expresses a wish not to be resuscitated and then becomes too weak to argue, and the family insists on resuscitation for “religious reasons”?
The obvious answer would be to go by the patient’s wishes, but it is not an easy thing for the team to do, when faced with the angry family. (In India, often, the family would simply take the patient away to a high-tech hospital in the face of such confrontation).
Dr Fine suggests that often physicians “acquiesce to the most insistent voice in the room”. The patient is weak and is less liable to be heard any longer!
He says, ‘among the rationalizations… for such avoidance behaviors are, “I’m getting paid to do the wrong thing, but that’s the system we live in and it’s not my problem to fix”, or the more cynical, “The patient should have chosen a better family”. Another common excuse….is “Dead patients don’t sue, but angry relatives do”.
The author goes on to explain the importance of keeping the focus on the patient. Taking decision-making away from individuals to “ethical committees” can help resolve the problem. Indeed!
Keeping the Patient at the Center of Patient- and Family-Centered Care
Abstract – The practice of palliative care typically refers to the focus of treatment as the patient and family. Tending to the needs of both patients and their families is usually good, but what should clinicians do when they perceive the best interests, needs, or treatment preferences of the patient are in conflict with those of the family or other surrogate?
Physicians may be able to suppress the inevitable moral cognitive dissonance of such circumstances, write orders, and walk away, but other health care professionals, especially nurses, may not have it so easy. This article suggests practical steps to obviate conflict in such circumstances before offering an ethical analysis focusing on notions of autonomy, beneficence, and true caring for patients, especially those near the end of life.
The limitations of surrogate decision makers are considered and legal liability concerns are briefly explored, ultimately leading to the conclusion that keeping the patient at the center is sine qua non of patient- and family-centered care.
via palliumindia.org
Advanced Directives Workshop at Mountain Lakes Medical Center
Regency Hospice will present "5 Wishes" an advanced directives workshop at Mountain Lakes Medical Center on Thursday, January 20th from 2:30 -3:30 p.m. in the conference room adjacent to the main dining room. For more information, call 706-490-2824 or the Regency Hospice office at 1-800-577-8791. Free admission and take home materials.
Monday, January 10, 2011
Time Off For Good Behavior
I can't say I am disappointed about having a "snow day".
Just like school, I was pretty excited to see the snow on the ground this morning. But then again, I am blessed to have shelter, food and family. This turned out to be a day of gratitude rather than worry over what work is left undone.
I wonder if school - I mean work is on for tomorrow.
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