Letter to American Medical News
January 6, 2012
Re: Handful of States Promise Physicians Online Access to Advance Directives, posted January 3, 2012 on amednews.com http://bit.ly/vFKMvx
When very sick patients are unable to express their wishes toward the end of life, nothing is more heartbreaking for doctors and loved ones than not knowing what those wishes are. It’s up to grieving and frightened family members to try to recall a past conversation, or remember whether there’s an advance directive, and if so, how to put their hands on it. Online registry programs for advance directives that give doctors access to this information would help ensure that we meet our patients’ wishes and that we don’t leave family members always questioning the decisions they were forced to make.
Patients need to hear from their doctors the importance of advance directives. They need to know that an advance directive can be changed, and that it can direct doctors to stop aggressive life-saving treatments, or continue them. Most important, an advance directive needs to be readily accessible when you need it. The American Academy of Hospice and Palliative Medicine has information on advance directives at www.aahpm.org and www.PalliativeDoctors.org
Ronald J. Crossno, MD CMD FAAFP FAAHPM
President, American Academy of Hospice and Palliative Medicine
by Ruth Mugalian, Public Communications Inc.
Read the full article about defining palliative care in the Winter issue of The Quarterly.
When I talk about my work with hospice and palliative medicine specialists and why I enjoy it, I usually say something like this: “They’re doctors who take care of very sick patients. They relieve their symptoms and make them feel better.” It should be a communications professional’s dream. It’s simple, understandable and positive. There’s no esoteric medical jargon or complex technical language to translate into layman’s terms.
And yet, that simple, positive description doesn’t quite capture it.
Describing what hospice and palliative medicine specialists do is an evolving challenge, as evidenced by the many different ways the doctors explain their work. Unlike many other medical specialties, there’s no simple one- or two-word description, like “heart surgeon” or “cancer specialist.” “They relieve symptoms” is far too narrow, but also too broad. Don’t most doctors relieve symptoms? And, what about all the other care they provide: the help with decision making and navigating the system, the coordination of care, the support for families?
Just summarizing the breadth of care is challenging enough, but of course, there’s another challenge. The heart surgeon fixes the heart. The cancer specialist attacks the cancer. HPM doctors don’t cure. They provide the care that helps the surgeon and the oncologist cure, and that helps the patient endure the cure.
And sometimes there is no cure. That’s when the HPM’s role takes on special meaning and ironically and frustratingly gets twisted into something negative: they withhold care, give up on the patient, hasten death. Of course, the opposite is true. They stay on the job when others have no more to offer. They continue, or begin, providing care when others have stopped. They’re passionate about controlling pain. Snappy phrases are tempting: “They don’t cure, they care.” “They never stop caring,” “Helping you endure, with or without a cure.” They’re simple, understandable and positive, and they don’t quite capture it.
The PalliMed/ GeriPal co-sponsored reception last night was a success. As repeatedly and succinctly put by social networking guru Christian Sinclair, the purpose of this event was to meet those with whom we’ve been communicating for the past 12 months, whether by Twitter, List-serve, blog or Facebook. Plus it’s fun! Present were PalliMed contributors and its principals Drew Rosielle and Christian Sinclair. GeriPal’s Alex Smith mingled with the crowd of more than 50 (I arrived late so may have been more earlier) with drinks and hors d’oeuvres that were gone by 9:30 pm. Others from the Social Media presentation were in attendance.
Putting real (vs virtual) faces with names is a luxury in this era of social media, where opinions are rife but the exchange usually one-sided (instead of truly listening one is busy crafting a response) so hope we can use these associations to further our personal and professional life skills.
Thanks for the break.
Hospice and Palliative Care Coalition Leaders Commit to Collaboration; Aim to Speak with “One Voice”
The organizational members of the Hospice & Palliative Care Coalition met in Washington DC in December 2010 to discuss recent, current and future opportunities for collaboration including ways to develop consistent and supportive messages on behalf of the entire field of hospice and palliative care whenever possible.
The Coalition was founded in 2001 when the American Academy of Hospice and Palliative Medicine (AAHPM), the Hospice and Palliative Nurses Association (HPNA) and the National Hospice and Palliative Care Organization (NHPCO) began meeting regularly by conference call. Since then, three others organizations have joined the coalition: The Center to Advance Palliative Care (CAPC), National Palliative Care Research Center (NPCRC) and National Association of Social Work (NASW). Over the years, the Coalition has met monthly to discuss regulatory and legislative issues, identify emerging trends and issues that cut across the field, and share information regarding the activities within each organization. In-person meetings are also held at least once a year.
During the most recent meeting, the Coalition reaffirmed its purpose and mission which is focused on providing national leadership to assure the availability of services and support for a broad range patients and families facing life-limiting illness.
Considerable discussion also centered around sensitivities surrounding language and consistent inclusion of key concepts and care settings when addressing on important issues, particularly those of interest to the general public and policymakers. The group agreed to use the inclusive phrase “hospice and palliative care” when describing the work of the coalition, and when taking action on behalf of the coalition on related activities and goals.
Participants in the recent meeting included: Ron Crossno, Sean Morrison and Steve Smith from AAHPM; Carol Sieger, Amber Jones and Diane Meier from CAPC; Susan Cox, Todd Hultman and Judy Lentz from HPNA; Betsy Clark, Stacy Collins and Chris Herman from NASW; Gretchen Brown, Judi Lund Person and Don Schumacher from NHPCO. Sean Morrison also represented NPCRC. Additional public policy staff and consultants joined the meeting in the afternoon to discuss collaborative efforts related to advocacy.
Those assembled also clarified the coalition would accomplish its mission by:
- Identifying and supporting a common agenda relating to public policy, education and research; and;
- Sustaining and enhancing access to high quality services that honor patient and family health care decisions
- Creating opportunities for collaboration and communication among members, staff and volunteer leaders whenever possible and appropriate
Leaders from the coalition agreed the meeting was very productive and remain committed to continuing to work together to improve quality of life for patients and families living with serious and/or life-limiting illness in all settings.
Welcome to the monthly edition of Palliative Care Grand Rounds the monthly review of the best of hospice and palliative care content from blogs. We started in February of 2009 and are almost done with our second full year. To see previous editions of Palliative Care Grand Rounds go the http://palliativecaregr.blogspot.com/.
This summer has been a exciting month for palliative care and hospice advocates. At the beginning of the month we were still taking in all the attention form Atul Gawande’s article in the New Yorker titled ‘Letting Go.‘ And then in the middle of August we had the ground breaking research published in the NEJM demonstrating early palliative care improves QOL, reduces depression and potentially can improve survival.
So I thought we could start with blog posts relating to those two big tent poles.
The Gawande Article
People were reflecting on the writing of Atul Gawande and I think there is a lot to learn from how he tells his stories. It may help in how you give a presentation or write articles or blog posts of your own. My favorite was a blog called ‘Not Exactly Rocket Science’, where blogger Ed Yong writes on ‘Deconstructing Gawande – why structure and narrative are important.’ Also check out Bob Wachter’s blog piece on Atul Gawande and the Art of Medical Writing. He writes:
In this month’s piece, Gawande continues to tackle the most important healthcare issues of our day. By doing this with such clarity and beauty, he makes us all a little smarter, wiser, and more sensitive. His writing is a gift.
Debra Bradley Ruder from the GrowthHouse blogs Goodbyes writes on the Gawande article as well.
The NEJM Study
Both Geripal (Alex Smith) and Pallimed (Lyle Fettig) jumped on the NEJM research quickly and provided really helpful insights into the research that you wouldn’t get just reading the New York Times or other media sources. Between these two posts there are currently over 35 comments! Several days later Drew Rosielle let the results marinate with him a bit and the result is a tasty dessert highlighting the implications for our field in his Pallimed post ‘You had me at improves HRQOL.’
Diane Meier jumped into blogging and wrote a good piece at the John Hartford Foundation blog, that was picked up my the (general medicine) Grand Rounds and got 2nd billing. Many other key blogs covered this as well including:
- Center for Practical Bioethics
- Hospice Foundation of America
- AAHPM blog
- Palliative Care Success (good one on applying the results of this study)
- db’s Medical Rants
- Science Codex
- Freeforall – A health policy discussion
- Right Truth – Palliative Care Improves Survival?
- American Cancer Society – Dr. Len’s blog
Other great bits
- Joanne Kenen has done a number of stories on palliative care issues and got a lot of feedback on her piece in Slate magazine about palliative care issues in the emergency room. She had a great follow-up piece with on her blog at The New Health Dialogue about the challenges to why these conversations don’t necessarily happen in a primary care setting.
- You may have heard of a new breed of patients: the e-patient. One of the vanguards in the e-patient movement is Dave deBronkart who recently wrote a book Laugh, Eat and Sing Like a Pig. He published an excerpt on KevinMD that is a must read and made me go buy the book too.
- You don’t see many CEO’s of hospitals blogging and no one does it better than Paul Levy. He had a great post about visitng patients in his hospital and the role of hope that I think many of us could identify with. An excerpt:
Each person faces cancer in his or her own way. There is nothing right or wrong about the different approaches people take. Denial or acceptance is not a statement about someone’s character. Having hope or not does not always come from an explicit decision to be hopeful; it often just happens one way or the other. Likewise, the spectrum from stoicism and strength to dependence and, yes, even weakness, are reactions that are unpredictable until you are actually faced with the disease. Too, how one feels can change over time — whether minute to minute, day to day, or year to year. So, one thing I have learned is not to be judgmental about how a person responds to cancer.
- In another post Paul Levy also discusses the case of the ER staff who took pictures of a dying patient and posted them to Facebook. Obviously this was a dumb thing to do, but people still did it so it begs the question, is this an issue of social media is bad or lack of professionalism? Read ‘Blocking Facebook won’t stop stupidity’ to find out.
- Eric Widera at Geripal noted the findings of the NEJM study may impact how we look at palliative care in nursing homes as well with his analysis of a recent study in the Journal of the American Geriatrics Society. How can geriatricians and palliaticians ( I just made that up) work closer together?
- AAHPM Board member and PC-FACS editor Amy Abernethy (with Donald Taylor) blogs at Health Affairs on End of Life Savings: The Fools’ Gold of Reform. An excerpt:
It is doubtful that a focus on reducing EOL spending per se will result in as much savings as is often assumed, for one simple reason: The concept of the last year of life is inherently retrospective. You do not know when the last year of someone’s life started until it ends. The stylized fact that leads to the assumption of wasteful EOL spending., i.e., 1 in 4 dollars spent on care in the last year of life, is based on an inherently retrospective concept that does not translate easily into the prospective decision-making that would be needed to reduce wasteful, futile or harmful spending in the last year of life.
- The anonymous blogger Hospice Doctor writes about going to funerals and the impact it has on our lives ina ddition to what it means to families. An excerpt:
And then I understood. I wasn’t crying for him. I was crying for me.
I cried because I couldn’t imagine a memorial service for me looking anything like the one for Rob. I cried because I couldn’t imagine that twenty people, let alone two hundred, would give up an evening to say nice things about me. I cried because I couldn’t imagine that my life, already a lot longer than Rob’s, would ever have that kind of meaning and impact. I understood then that my patient’s short life was telling me to live the rest of my own life better — to be warmer, and more open-hearted, and more loving.
- Frances Shani Parker from the Hospice and Nursing Homes Blog found a great video on YouTube from the EPEC-O series featuring Charles Von Gunten on burnout and wrote a post about a recent study from the Mayo Clinic on physician burnout.
- Richard Smith blogs over at BMJ about Contemplating my deathbed and discusses the various regrets people may have and hot make sure you don’t have so many regrets yourself! An excerpt:
people—actually mainly men—wished that they hadn’t worked so hard. They “deeply regretted spending so much of their lives on the treadmill of a work existence.” My wife would say that I work all the time, but I live a life where work and play are not easily distinguished. Is writing this work? It doesn’t feel like it to me. Tomorrow I’m off to give a talk at a science festival in the Austrian Alps. Is that work? The truth is that even in the most serious jobs I’ve always let the appealing (and often frivolous) come before the serious.
- Alex Smith from Geripal created this very funny animation about trying to use your great communication skills honed in palliative medicine at home when your spouse asks you to ‘take out the trash.’ My favorite line: “I wish the trash were taken out but unfortunately it has not been”
- Brian Vartabedian of the very excellent blog 33 charts found an old ad for senna that you may want to bring to your next IDT.
- No one likes to say the words death or dying, but we know it is important to be able to convey these messages with honesty and in an individualized manner. Schott’s Vocab at the New York Times asked readers for different ways you could euphemize ‘dying’. I will warn you some are coarse, some poignant but check out some of the 845 comments and counting for ways to say ‘Kick the bucket.’
- And finally we have heard that Oscar the nursing home cat that can predict the impending death of patients has a movie deal based on the book. Let’s hope they get an advisor on the movie who is knowledgeable about hospice.
So as you can see there are many people talking about the difficult things people don’t want to talk about. We are not alone in wanting to provide good quality care for patients and families facing with life-threatening illness. Sometimes with a little humor is a tough time, sometimes with fantastic insights into what it means to be alive. Go read and support the things that impact you with a comment, Facebook ‘like’ or email to a colleague.
PCGR has subscription options; you can follow by email or RSS feed. An aggregated feed of credible, rotating health and medicine blog carnivals is also available.
Most of you have already seen the study released yesterday in the New England Journal of Medicine and I suspect that those of you who work in palliative medicine were not at all surprised by the results: patients who received palliative care along with standard oncology treatment for advanced lung cancer not only had a higher quality of life, but lived three months longer, as well. Isn’t that what we’ve been saying all along?
I have personal experience that supports their conclusions. When I was diagnosed with advanced ovarian cancer in 2008, I relied on a program of palliative care to enable me to tolerate the toxic intraperitoneal chemotherapy that was recommended. I was determined to get ALL of my treatments, WHEN they were scheduled, in order to give myself the best chance of responding. I sought out aggressive symptom management, controlling the pain and nausea so that I could be ready for the next round of treatment. I saw an oncology counselor and set up a website to coordinate meals for my family and me. I prayed. My friends prayed. Friends of friends prayed. I used acupuncture, initially to help with the nausea but later, just because it made me feel better. Three Reiki masters came to my home weekly to keep my energy positive.
And I stayed on schedule! I had chemotherapy the day before Thanksgiving (only because they were closed on Thanksgiving and Thursday was my “usual” day). I finished my last treatment on Christmas Eve. I was determined to do this and palliative care made it possible. With an “n” of one, I’m not a randomized trial, but I did better than those around me. And, I’m still here two years later to marvel at my survival.
But now there IS a randomized trial!
151 patients with newly diagnosed, metastatic non-small-cell lung cancer were randomly assigned to receive either early palliative care integrated with standard oncology care or standard oncology care alone. The primary outcome was the change in quality of life at 12 weeks, assessed by the Functional Assessment of Cancer Therapy-Lung (FACT-L) and the Hospital Anxiety and Depression Scale. Data on end-of-life care were collected from electronic medical records.
Patients who received concurrent palliative care had a better quality of life than did patients who received standard care alone (P = 0.03). They also had fewer depressive symptoms (P = 0.01). At the end-of-life, the palliative care group had fewer aggressive treatments (aggressive care was defined as receiving any of the following: chemotherapy within 14 days of death, no hospice care, or admission to hospice less than 3 days before death) (P = 0.05). Despite this, the patients who received concurrent palliative care from the time of diagnosis lived longer – almost 3 months longer (ll.6 months vs. 8.9 months, P = 0.02).
This study confirms the importance of palliative care begun at the time a serious illness is diagnosed, enabling patients to live better AND to live longer. Great news for patients and for the field of palliative care.
Have you heard yet that AAHPM has partnered with ReachMD, an innovative communications company, providing thought-provoking medical news and information to healthcare practitioners? More importantly, have you listened?
Established to help increasingly time-constrained medical providers stay abreast of new research, treatment protocols and continuing education requirements, ReachMD delivers innovative and informative radio programming via XM Satellite Radio Channel 160 and online streaming developed by doctors for doctors.
The Perspectives in Palliative Medicine series has been a huge success. With over 650 people downloading shows and others listening at home or in their cars, so many are tuning in to hear about key issues in palliative care. The latest programs,, hosted by AAHPM Executive Vice President Porter Storey, MD, include :
• The Challenges to Pain Management in Geriatric Patients – 04/12/2010, with R. Sean Morrison, MD
• Religious Issues Affecting End of Life Care – 04/05/2010, with Richard Payne, MD
• Palliative Care’s Role in Treatment of the Seriously Ill - 03/29/2010 with Russell K. Portenoy, MD
• Warning Shot: How to Deliver Difficult News – 03/22/2010, with Gail Austin Cooney, MD.
We are proud of our members who have done such a wonderful job representing the profession. If you haven’t listened yet, check it out, if you have, share your thoughts with us!
AAHPM submitted the following letter to US News & World Report in response to Dr. Bernadine Healy’s “On Health” column from the recent February 2010 Special Issue – “Aging Well” – which included some misleading comments about hospice and palliative medicine. We encourage AAHPM members to post their thoughts at the end of the article in the Reader Comments section.
Letter to the Editor
US News & World Report
February 12, 2010
Bernadine Healy is correct when she says that patients need to be informed about their health care, including end-of-life care (On Health, February 2010 – Special Issue: Aging Well). As a doctor who specializes in hospice and palliative medicine, I have always urged patients to have living wills and to discuss their wishes for end-of-life care with their doctors and family members.
But some information Dr. Healy presents about palliative medicine is simply incorrect, and suggests that expanding the availability of palliative medicine will limit options for people with serious illness. Exactly the opposite is true.
Palliative medicine is a board-certified medical specialty that focuses on relieving suffering and providing support and care coordination for patients with serious illnesses, regardless of age or prognosis, or whether curative treatments are being given. Many of our patients recover from their illnesses and credit palliative medicine with making grueling curative treatments bearable.
Studies show that palliative medicine decreases hospital admissions, and Dr. Healy fears this goal of health care reform will result in premature death for patients with chronic and incurable illnesses. Palliative medicine keeps patients out of hospitals by relieving their symptoms and coordinating their out-patient care, which often reduces the need for hospitalization. It’s better for the patient and the family. And, yes, it saves the system money.
Dr. Healy refers to “so-called terminal sedation” and seems to suggest that this is one way that hospice care – a specific type of palliative care – might be used to hasten death, and cut costs. I believe she is referring to “palliative sedation.” Palliative sedation is used – rarely – to bring relief to patients already near the end of life whose pain and suffering are overwhelming and otherwise uncontrollable. When it is necessary, and a patient chooses it, palliative sedation can enable us to fulfill our promise to help our patients face death with some comfort and control.
My colleagues and I chose to practice palliative medicine to ease pain and suffering, and give patients more control over their care. The health care reform debate has brought attention to our specialty – not always accurately. We want people – especially those who may need the care we provide – to have the facts. They can find them at www.PalliativeDoctors.org.
Gail Austin Cooney, MD
American Academy of Hospice and Palliative Medicine