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Sarah Palin has done a terrible injustice to humane, caring, and coordinated health care. Palliative care is a medical specialty which provides coordinated, comprehensive care to reduce pain and suffering, while trying to heal or cure anyone who is given a life-threatening or life altering diagnosis. Sadly, without any factual or medical knowledge of palliative care, Mrs. Palin called this essential medical care “death panels.” Because of her, and some others, palliative care was removed as a covered benefit from the Affordable Care Act. Dr. Diane Meier, Director of CAPC (The Center to Advance Palliative Care)at Mt Sinai, spent a year in DC trying to get palliative care into the Affordable Care Act; however, at the last minute it was removed as a covered benefit because of the fear created by Palin and others calling it”death panels.”
Sadly, Mrs. Palin is back on the scene and is continuing to make remarks about “death panels,” reinforcing this idea in her latest video. Unfortunately surveys indicate that many Americans believe still believe this. I have written this Open Letter to Mrs. Palin to help educate people and try to undo some of the harm she and others have done. It is my hope that people will learn about this essential care, ask for it if/when it is needed, and contact their elected officials to ensure that palliative care is part of the Affordable Care Act or any bill that provides health care.
Dear Mrs. Palin,
I am writing this letter to you because of statements you have made about healthcare that have affected and will continue to affect many people. I am hoping that I can address your concerns and educate you and the many people who are currently misinformed.
I am not an advocate for the Affordable Care Act (ACA). I believe in a single payer, Medicare for All healthcare system, which would provide equitable coverage for all people in the United States. However, currently ACA is the law. One of the very important medical benefits that would have been covered under ACA (and is a covered benefit under HR 676, The Expanded and Improved Medicare for All Act), is the medical specialty of palliative care. Unfortunately, without understanding the value and importance of this medical specialty, you labeled this essential care as being “death panels.” It’s just the opposite!
During our lifetime, many of us will face life altering or life-threatening illnesses or injuries, or perhaps we will watch those we love face them. Everyone is going to pass from this world–hopefully to a better place. We need a system in place that can provide support, guidance and direction to those who are facing these challenges. This system is called palliative care.
Palliative care is a medical specialty which provides coordinated, comprehensive care to reduce pain and suffering, while trying to heal or cure anyone who is given a life-threatening or life altering diagnosis. Seriously ill patients need a plan to help them locate appropriate services, provide the best treatment options and help them transition to the most appropriate environment. Palliative care would help patients and their families navigate the system, as well as find pain relief, comfort and cure, if possible, right from the beginning of their diagnosis.
This medical specialty differs from hospice in that you are not required to have a six month or less, prognosis, and curative/restorative treatment is allowed and provided. Palliative care does not just provide care to those who are dying (which is an essential hospice service); it also provides care to those who are ill, and can be or might be, healed or cured.
In practice, palliative care would be the medical equivalent of an Individualized Education Program (IEP); it could be considered an (IMP), an individual medical plan, for anyone with a serious or potentially serious medical diagnosis. This care is routinely provided by a team that includes physicians, nurses, chaplains, social workers and others who work together with a patient’s own doctor to provide an extra layer of support for the patient and for the patient’s loved ones.
Palliative Care is accredited by the Joint Commission whose accreditation and certification is recognized nationwide as a symbol of quality and a commitment to meeting certain performance standards. The Commission accredits and certifies more than 20,000 health care organizations and programs in the United States. In reference to palliative care, the Joint Commission states, “Palliative care is an approach designed to improve the quality of life of patients and their families by relieving the pain, symptoms and stress of serious illnesses such as cancer or AIDS.” Their standards for palliative care certification became effective in August 2008. Palliative care works to save lives if possible, reduce pain and suffering and provide dignity and respect.
Mrs. Palin, by calling palliative care “death panels,” you have set back the practice of humane and coordinated medical care. I speak from personal experience. First, I was a special Ed teacher. For most of my adult life I worked with special needs students, including those with Down syndrome; I worked for more than thirty years with children and their families who faced challenges daily. Many of the techniques my colleagues and I used to uplift our students and also help their families were based on the practices and methods of palliative care.
Also, with much deep sorrow, I watched my own beloved husband Joe suffer and pass from pancreatic cancer seven years ago, without the benefit of palliative care. Joe was diagnosed with pancreatic cancer in the fall of 2006; although he had full medical coverage, there was no system in place to help us get the care he needed. We were on our own, without guidance, without support, without adequate pain management. We were alone!
Palliative care would have provided an essential support network, directing us to get him the treatment and care he so desperately needed, right from the beginning. Because Joe did not have the opportunity for this essential care, he suffered horrifically and needlessly. Neither the diagnosing gastroenterologist who told us over the phone, “The results of the biopsy are not good; you need an oncologist,” then hung up, nor the hospital in which he was treated for this catastrophic illness, practiced palliative care. Although Joe was valiant, his pain level in the hospital was hardly ever less than 8 and at times it was “off the charts.” I accept it was Joe’s time, but a palliative care program would have gone a long way in helping to ease Joe’s suffering and my grief at seeing it.
Palliative care should be a usual and accepted part of a coordinated comprehensive medical plan that sees to the best interest of the patient and the patient’s family. It is crucial and must be included in any bill that calls itself healthcare reform. Although many institutions now provide palliative care (it’s at the core of such medical centers as the Mayo Clinic, Johns Hopkins, the Cleveland Clinic and Mt Sinai, to name a few), it is still a relatively new specialty; in some areas it might be necessary to ask for it.
Yet Mrs. Palin, without having any factual or medical knowledge of palliative care you called this essential care “death panels.” Did you check with any medical authorities before you made this statement? Did you call the Joint Commission or any other experts in this field? Did you contact someone like Dr Diane Meier, Director of CAPC (The Center to Advance Palliative Care) at Mt Sinai? Dr Meier is renown worldwide as an expert in palliative care. She is a recipient of the MacArthur Genius Award; last year she was also awarded the Medal of Honor by the American Cancer Society for her work in this field. Did you take the time to check with The American Cancer Society? They strongly support palliative care to help reduce the pain and suffering caused by cancer and cancer treatments, or did you try to get information from an organization like Healthcare Chaplaincy? Their mission is, “To improve the effectiveness and efficiency of healthcare through the innovative ways chaplains promote and advance palliative care research, education and practice.”
I’m sure if you had taken the time to do research about palliative care you would have understood its importance to healthcare and healing. Instead when you erroneously labeled this essential care as being “death panels,” as being a detriment to health and healing, many people became alarmed. Because of the alarm your statements created, palliative care was removed as a covered benefit from ACA. Mrs. Palin, regardless of what you may think of ACA, palliative care could and would help many people and their family members and/or loved ones dealing with serious illness or injury. Why didn’t you do the necessary research to understand this essential care? Why?
No one can feel another person’s pain;our brains have been wired this way in order for us to survive. Although we may not understand another’s suffering we can and must provide treatment to reduce it. I hope that you will take the time to learn about palliative care so you can correct your misconceptions and misstatements then share your understanding with others. Hopefully, someday palliative care will be routinely practiced and supported by all health care professionals and institutions.
I urge you Mrs. Palin to please open your mind, your heart and your soul to understand this essential care. Critically, chronically ill patients just cannot wait.
Sincerely,
Beverly Alves
Bev, Thanks for writing about this important issue. I am a practicing Palliative Care physician and appreciate your support.
What you have written should be understood by all of us who use/need medical care. I’m afraid addressing it to Sarah Palin is a waste of energy. She and her ilk have an agenda that will not be changed by facts or logic. It is about disabling–not enabling.
I have to agree with you Fred. I can’t see Sarah Palin or her following taking the time to read such an important letter, they have their agenda. However, I will post the letter on FB, etc., and use social media to it’s advantage.
As a Hospice RN for over 23 years, palliative care has been a part of my practice since its inception. However, there are some differences between hospice and palliative care – and the fact is that BOTH OF THESE SERVICES ARE COVERED BY THE ACA. What they took out was the payment they had put in to pay docs for discussing death and dying issues with patients. It is often a very long and extensive conversation and in the past if the doctor or other provider wanted to talk about it they couldn’t charge for only that during a visit. They had to do some other “medically necessary” activity in order to be reimbursed for that discussion.
Now, because of Palin and others like her, doctors still have to be creative in their charting to grt the visit where they actually discuss palliative care and death and dying issues with their patients for the first time.
And, yes, I agree with the writer that this was a disaster. Many doctors put off these discussions until they can no longer wait any longer just because of the hassle of getting reimbursed.