New Studies in Palliative Care
http://thedianerehmshow.org/shows/2010-08-24/new-studies-palliative-care
Palliative care can be a powerful therapy for the pain and stress of serious illness. A new study shows it not only improves the quality of life, it actually extends it.
Guests
Dr. Diane Meier
Director, Center to Advance Palliative Care at The Mount Sinai School of Medicine in new York City.
Dr. Atul Gawande
Author, staff writer for New Yorker, surgeon at Brigham and Women’s Hospital and Associate Professor at Harvard Medical School and Harvard School of Public Health
Dr. Jennifer Temel
assistant professor of medicine at Harvard Medical School, an attending physician in thoracic oncology at Massachusetts General Hospital and lead author of the study of palliative care on terminal lung cancer patients.
Christina Tafe
palliative care nurse practitioner at the Lombardi Comprehensive Cancer Center at Georgetown University Hospital.
Comments
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The role of choice and control in "when to let go", in how you live all of your life is so essential to patients.
My father was diagnosed with stage four lung cancer. It took me a few minutes on the internet to find out what his life expectancy was. His doctor told him that he could "cure" his lung cancer. My father underwent terrible chemotherapy - had a terrible time and died 1 day before the life expectancy time that I found on the computer. I can only imagine how his last 9 months of his life might have been had he had the opportunity for palliative care. I learned from his experience that I would consider palliative care first if I was diagnosed with cancer and I hope that I might have the grace of some period of relative health and be able to say goodbye properly to those I love.
Imagine the publicity that a pharmaceutical company would splay if a study showed their drug to improve quality of life, reduce depression, and help people with cancer live 3 months longer! Thanks, Diane, for helping to broadcast this important information.
I also would like to hear the distinction betwen Hospice Care and Palliative Care.
My father was diagnosed with ALS 10 years ago. He was a retired Pathologist, and knew well the trajectory of the disease and his life. He was pursuing physiciain-assisted suicide against the wishes of our family UNTIL one of his colleagues explained palliative care. He immediately had a new perspective on his life and pending death and died shortly thereafter at peace. I was so grateful for this turn in his heart.
Hello Diane,
I listen to your show every day because it fulfills my expectations of high quality objective journalism, thank you, you are awesome! I was diagnosed with stage III breast cancer and since I started my therapies (chemo and radiation) I accompanied them with yoga and meditation as a mean to help improve my very delicate health condition. I truly believe that “thinking in positive terms and reaching out to other resources such as yoga and meditation,” elevated my personal experience with such devastating disease. I am the mother of 2 incredible girls (Sofia, 9 and Ana 4, years old) and they were the main reason for me to find the best of me within myself which I found in these practices. I never found myself as a combat of a war term. I don’t see myself as a “survivor”, I never “battled”, and I just pursue to improve my health by combining both excellent medical care and palliative methods as yoga and meditation. My oncologist, Dr. Oscar Signori was always very supportive of my practices and that gave me the strength to continue my recovery. I do believe in palliative practices to improve the overall well being.
Thank you,
Cecilia Escobar
Canton, Michigan
Thank you for your insightful shows!
Cecilia
"How did we get from palliative care to... death panels?" Seriously?
That was a great question for highlighting the shameless cynicism and demagoguery of Healthcare Reform opponents -- too bad the panelists didn't put a sharper point on their responses.
I think the importance of having doctors familiar with palliative care is critical. My mom, who recently passed away due to ALS, lacked the care and support during the duration of her almost 6 year illness. Her neurologist, never broached the subject of what her final days might look like and what were the tools to manage her disease. Of course hospice was helpful but it was disappointing that her neurologist who saw my mom every three months was unable to realistically talk to my mom about her disease. Thank you to today's guest for raising awareness regarding this critical need.
The incorporation of Palliative Care into standing Hospice outreach programs could improve the speed of putting these programs in place . Is this suggestion reasonable?
I am a recently retired physician. My son is a first year medical student at UMass. His required reading this summer was Best Practice--a great book. After reading Dr. Gawande's New Yorker article I sent it to him and suggested that it be required reading for med students as well.
IMO You are not making it sufficiently clear that palliative care can (and likely should) be provided in addition to therapeutic and medical treatments of the disease, EVEN IF a terminal prognosis is not indicated... Palliative care extending life is only proof that palliative care is salutary, beyond the efficacy of medical treatment clinically. Being given palliative care is not a stealth way of saying, "you're a goner... we can help you swallow your fate without choking on it"
Many years ago, scientists conducted studies in which they used LSD and other psychotropic drugs to improve quality of life for patients with terminal illness. The experiments were highly successful. The government ended the experiments when these drugs were criminalized. But what is the risk in giving a person with a terminal illness a drug? That he or she may become addicted? The bans on use of drugs for this purpose were a combination of politics and irrational fear. Shouldn't doctors involved in palliative care, like your guests, take on the responsibility of making this case?
Is the issue of pace-makers and whether/when to turn this off a topic in palliative care? Can your guests comment at all on this issue?
I am a nurse who recently cared for a patient (and family) that had made decision about care I respected. The patient was 90+ years old with early dementia. Right now he still has a good memory of his family most days. He also has advanced heart disease and requires a pacemaker to continue to function well. The pacemaker batteries have begun to fail, but the patient still feels healthy.
The family and patient have decided against replacing the pacemaker. They feel the best choice is to enjoy their time together rather than risk exposure to a proceedure that has potential complications.
They still seek treatment for 'fixable' acute problems. The only thing they don't treat is the pacemaker related problems. They are the picture of DNR not meaning do not treat. They do treat things that won't lead to the patient's natural end of life. They don't treat things that are part of that dying process.
Terminal problems aren't always cancer. The heart, end stage liver and lung disease are equally terminal. But some doctors and families fail to recognize and discuss treatment that keeps dignity and quality of life with these patients.
Can you talk more about palliative care for dementia patients? My mother is in the late stages of alzheimer's, and was recently discharged from hospice care. We can't find an adult care program because she requires so much attention due to her condition. This disease is incurable and medication is of no help. She's been at this stage for a couple of years now, though she's not in any physical pain. How would palliative care help her?
It seems to me from your discussion that palliative care is an extension of "discharge planning." Conceptually, this should begin on admission to hospital, and continue to be developed until discharge, to help the patient move from hospital to home, to prevent unnecessary readmission, and promote health management at home. This has always been part of RN's responsibilities. Why shouldn't requests for palliative care team consult be initiated by RNs? I think hospitals should decide that RNs can initiate this as a nursing order.
Abbey Pachter, PhD, RN
You have such excellent topics. Atul Gwande's book The Checklist Manifesto was a great read. I would like to learn more about palliative care versus end of life care and Hospice.
What are the criteria that applies, I know you have talked about chronic diseases, eg. diabetes, CHF, CA etc. But how does one meet the criteria for it?
I am a nurse involved in a palliative care program at a hospital that does more trauma and serious chronic medical illness. Many of our patients are not end of life but the patients and their families need help dealing with the healthcare process. Ours is a new program and we deal with a lot of push back from the more established doctors that want to deal directly with their patients when in fact they fall short of that goal. They feel we will take their patients away from them. We have tried to educate them on what we do to work with the doctor and their patients as a team. Palliative Care can make a difference.
Your guests do not consider the case where a hospice worker actually causes pain to the patient through ignorance and/or abuse of the patient. When faced with this scenario I had the hospice worker removed from my house; later the hospice worker retaliated by having me investigated by social workers for elder abuse.When I wished to file a lawsuit against the incompetant hospice worker, I was advised by my lawyer that because the hospice workers are viewed by society as professional "do gooders" it would be almost impossible to win the case. The hospice workers also do not care about the mental/conscious state of the patient (for example: If the patient explicitly wishes to remain as alert as possible); they only want to see that the patient does not complain (hence overdoping with morphine and/or other drugs that are not recommended) and they allow patients to remain in their excrement without cleaning them, a condition reminiscent of the worst practices in nursing homes. I would not allow my parent to remain in such a condition and daily bathed and cleaned him . When I checked the medications that were being prescribed for my parent , the specific drug that the hospice recommended was actually contraindicated by both the drug company and a second specialist that I immediately called/consulted before giving the drug to my parent. I did not administer the drug. My opinion of hospice workers is that they represent the dregs of the medical profession; they are insensitive to their patients, having already written them off as corpses ; and having usually less than a college education, they are prone to advertise themselves as "professionals" when they have no knowledge of basic medicine/physiology. I came out of this ordeal with praise and sympathy for the Kevorkian/hemlock society approach.
After a few months of coughing, my otherwise healthy mom had her first Dr. visit in over 20 years. She did yoga, ate organic, saw an acupuncturist, meditated, and lived a very active lifestyle for 70 y.o.! When the general practitioner did a CT scan they found issues in her lungs which they suspected had metastasized to her liver. As a researcher myself I got moving to find her some resources to help her through her journey. Against the MANY disappointing looks from physicians, she stood strong in her beliefs and chose not to do Chemo or any other invasive procedures. I have struggled terribly trying to find her resources including supportive DR.s/ physicians that can help guide her homeopathic or nutritional choices, telephone counseling or support groups for people choosing to live through cancer rather than go the chemo route.
I have found CAM (complimentary alternative medicine) to be highly unregulated with regard to what offices offer (some offices I spoke with included the oral chemo pill as part of complimentary alternative medicine). Equally disturbing (and rarely mentioned) is the issue that the alternative medicine aspect of CAM does NOT stand alone, it is complimentary alternative medicine attached to traditional forms of treatment.
For patients like my mom, finding any professional support and care is difficult. Physicians seem unfamiliar with the type of care discussed on your show today.
My father was subjected to successive heart surgeries despite being in one of the best "heart" hospitals & a having a renowned doctor...
watching his struggles and those currently of a young, dear freind who's been in ICU's since April---both of whom have had vigilant family patient advocates...one thing is perfectly clear.
Once the initial reason for the patient being there is under control...despite other complications, be they hospital related infections, surgery complications, need for a ventilator, the hospital seems to loose interest and no one - other than family, treats the whole patient....and they get warehoused, neglected and end up staying and catching subsequent infections or have falls - which hopefully they are strong enough to survive.
Patients with complication without family advocates must have little chance of survival....
I'm listening your show... it is very interesting that people is turning to alternative treatments as "Palliative Care" to traditional treatments for terminal illness as cancer... I know how brutal traditional treatment can be for a patient... My father died of prostate cancer and I have a nephew with a tumor behind the eye... however, alternative treatment with certain natural products have proved to be not only helpful but totally effective... I'm talking about a product recently developed the name is "Transfer Factors", this product is produced by 4Life Research Inc, basically transfer factors boost immune system 437% giving strength and "intelligence" so can identify cancer cells and destroy them... sounds like science fiction... but is real, you can read a study made by Russian Health Ministry about this transfer factors... the results are amazing... http://russianhealthministry.blogspot.com/2008/04/effect-of-transfer-fac..., in fact, now transfer factors are a parallel therapy for cancer in Russian hospitals, besides, Dr. Emma Oganova who directed this study is now part of the Medical Board of 4Life Research... and the cost, in comparison to regular chemotherapy treatment, is really low... Besides, this product can be used to treat any disease related to the immune system as LUPUS, FIBROMIALGIA, ARTHRITIS, ALLERGIES, AIDS, HIV, CROHN disease, etc., in short this product does NOT cure, but gives your immune system the strength and intelligence to fight back the disease. (see www.raymundo.my4life.com)
It is a very exciting time right now for those of us who find our life’s work in Palliative Care. Of course we knew in our hearts the benefits; the increased QOL, the decreased hospital readmissions, the prolonged survival rates, patient satisfaction and lastly, decreased medical costs. The results of this study came as no surprise, but they came at a perfect time and the attention that it is getting is well warranted and will hopefully be advantageous to the advancement of palliative care programs around the world. I personally want to thank Dr. Guwande, Dr. Meier, Dr. Temel, and Christina Tate for participating in this "Meeting of the Minds" and especially to Diane for facilitating such a program. The advancements that have been made in the Palliative Care community recently are a credit to these individuals and their years of hard work. One of the most unfortunate events in this process is that legislation could have been brought forth months ago that would have made a huge impact in advance care planning, but politics once again ruled over greater good and the so-called "death panels" became a bargaining tool instead of a paramount part of that legislation. Certain forces utilized peoples own fear to abolish something that was never fully understood in the first place. If Palliative Care programs and their implementation in almost every health system in the country do not become a part of ANY healthcare reform that we initiate, no other measures we take will be effective, and that would be a huge tragedy. Anyone examining the system, not with a fine tooth comb, but with a spoonful of common sense, can see that palliative care in and of itself can solve a great number of the problems we have in healthcare today....misappropriation of resources, finances, patient satisfaction...the list goes on and on. Wake up America we are not trying to ration your access to healthcare but rather trying to help you choose what is best for you in your current circumstances.
Ten years ago, when my husband was diagnosed with advanced lung cancer, I knew exactly where to go for help: Palliative Care at the Mount Sinai School Medical Center. We were fortunate to be NYC residents, to have physicians affiliated with Mount Sinai, and to have had experience previously with Sinai's incomparable Palliative Care team. My husband had an oncologist and other doctors, but Diane Meier, MD, Director of Palliative Care, was key in his treatment, his well-being, and his ability to remain at home throughout the months of illness, right up to his death. The Palliative Care team supported our decision to end chemotherapy when it was no longer helping and it was making him too ill to have any decent quality of life. Palliative Care physicians helped us withstand a radiologist's strong urging (I prefer the word "pressure") that my husband undergo daily radiation for 4 weeks by checking into the hospital. Instead, he elected to lead a life as close to normal as possible during his final weeks - in the comfort of our apartment- with visits from family and friends. With the Palliative Care team's support, I developed confidence that I could take care of him and monitor his medications, with Dr. Meier's guidance. My husband was assured that he would not suffer pain. The Palliative Care team addressed his emotional and psychosocial needs, as well as my own.
Subsequently, I have learned how important it is for palliative care to be made available early in the course of serious or chronic illness and pain. Palliative care is appropriate whether a patient has 2 months or 20 or more years to live. All medical professionals need to be educated in the efficacy of this kind of medicine, and the general public too must be educated, so that patients and families know to ask for it.
When my 91 year old father was ill with chronic heart problems and dementia and yet still maintaining that he would live to be at least 100, palliative care would have been exactly what he needed. He was not emotionally ready for hospice, but he could have used the comfort care that palliative care provides.
I wish this research and information had been available a year ago. We would have engaged palliative care 6 to 8 months before his death instead of 1 month before, and he would have had a much better quality of life in his last months. I hate to think that it was party politics in Washington that kept this information largely unavailable and even stopped health care providers and hospital social workers from recommending it to us.
If my dad had been in a palliative care program, I know that our lives as caregivers would have been less stressful and we would have had a more positive experience with dad as his life was ending. We write about our experiences as caregivers at Inside Aging Parent Care www.desperatecaregivers.com
After hearing this excellent program, I'm left with two questions:
1--Why is relieving symptoms considered palliative care? Isn't that just care?
2--Why would an expert in the field not pronounce "palliative" properly?
My Dad underwent palliative (broke BBB) radiation treatment (for rare postcricoid tumor). I had fought against RT as I knew my Dad would not survive it. There was only one discussion of immunotherapy, even though curative went from 50% to 20%, treatment continued. Absolutely nothing was done to protect him, and RTshould have stopped.
Dad was never offered in home hospice, refused SNF (discharge codes impact reimbursement). After completing 33 treatments, he was sent home in obstructive ARF with incubating HA pneumonia, without treatment & LFTs↑ (unreported hydromorphone reaction). Dad been admitted for last RT only. If treated for’ not POA’ it would have impacted reimbursement. So on next, and final admission (10 days later), it was too late.
We have attempted to challenge the fortress of systemic bureaucracy to report fraud, gross negligence & sub-standard ‘Acceptable Standards of Practice’ to the appropriate authorities, but all has been sanctioned by DPH, QIO, Joint Comm, HHS/OIG, CMS. My Dad’s D.C. is falsified and he remains a falsified vital statistic. Had iatrogenesis been addressed it would have saved the taxpayer thousands (i.e.pacer at taxpayer expense due to reaction to cocaine hydrochloride.)
Dad had a surgically flawless hip replacement that healed readily w/o issue. Subsequent events: med reaction, ARF/CRF, several unreported nosocomial infections (i.e.HA MRSA), stage IV decubitus (gauzes left in sacrum), expunged MRSA bacteremia, hemo abnormalities, untreated systemic inflammation, cryptogenic cirrhosis, insulin resistance, etc. to rare tumor. All allowed for exploitation of pre-existing co-morbidities, and gave carte blanche to extensive falsified, creative coding.
I had read a lot re: death panels – and in my father’s case they do exist. Under iatrogenic allopathic ‘care’ my Dad was forced to suffer and die...and was denied any morsel of dying with dignity.
Palliative care is also essential to the well-being and effectiveness of the primary family caregiver.
Today is an example of how the toughest topics are often the most needed to accurately inform the public. An oncology nurse was the first to fully inform me about palliative care and hospice strategies. She sees too much suffering among cancer patients who were highly certain to succumb but were sold on heroic measures. Someone above explained how palliative caregivers and hospice workers are not always perfect or ideal in their actions. I agree, because they have a highly stressful and demanding job. One main flaw in medicine for profit is that physicians and hospitals are always tempted to sell more tests and treatments even when they can do no good. I have even suspected false positive diagnosis for the uninformed as a profit strategy. Medicine is often rotten in America.
As a recent widow and former caregiver, I'd like to point out that much of palliative care can be relieving symptoms and side effects of TREATMENT, not just illness. It is so difficult when people keep mistaking palliative for hospice; they hear "palliative" and think "giving up", when it is just not so.