Friday, August 30, 2013
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Original Case by Rene Claxton, MD, Edited by Christian Sinclair, MD
Friday, August 30, 2013 by Christian Sinclair ·
Friday, August 23, 2013
My friends envy the extended visits I have with patients where I learn about their family and friends and, by doing so, also learn about their goals and fears. The time I am permitted to invest in my patients allows me to find out who the person is and then work to match the medicine to their needs. My colleagues often talk about the opposite - how their job is to make the people fit the medicine. We've marveled over this golden part of medicine where, at least as they die, hospice provides patients what they really need to live well.
Most of us practicing in this field recognize this could not continue indefinitely. With increasing complexity of hospice patients, an aging population and less options for debilitated patients with poor social supports, it was inevitable that the growing cost of hospice would catch someone’s eye and become a target for cutbacks. We've seen necessary layoffs and closings of hospices across the country. Last month this became a personal reality when the hospice I work for was shaken by a downsizing where we lost 19 valued colleagues. We consolidated our two hospice units into one with a loss of four beds. This was made necessary by the increased scrutiny and decreased payments we have received for the care we provide. We now pick apart each component of the GIP stay to be sure patients meet criteria. We second-guess enrollment of patients whose prognoses are in question even when their symptom burden clearly demands hospice support. Our ability to ‘do the right thing, because it is the right thing to do’ has gotten more limited as we rely more heavily on benevolence funds to provide care for patients for whom insurance does not cover the bill. Increasingly, the feeling that I, too, force my patients to fit into the mold of medicine is creeping up on me.
On the day our agency announced the consolidation, I was caring for a young woman in our inpatient center. During her stay she had been very verbal about her appreciation for the way the hospice team cared for her and worked together to provide comprehensive care. She felt a level of respect and humanity she had not felt anywhere else in her long experience with medicine both personally and professionally. When she read about the changes in the news paper the next day and sensed the grief we were all feeling she was appalled hospice would cut back like other areas of medicine. She made it a point to tell us,
“No matter whether you get lumped in with the rest of medicine, you are still special. What you do here is still special. That needs to be recognized.”I’ve chosen to believe her. Because if I didn’t, it would be hard to continue to do what we do, knowing we now have one hand tied behind our backs. What we do is special. The people in this field are special. As financial resources continue to change, the field will be forced to change as well. What will not change is that there will always be caring nurses, physicians, counselors, and friends who recognize the value of meeting patients where they are and maximizing their lives as they live with serious illness. Seemingly, hospice and palliative medicine is unique in the way we still place value on time and attention to the person. We cannot lose this focus. The way we deliver the care may change. The setting in which we deliver the care may change. I am hopeful the commitment to care will not.
So where do we go with all of our compassion and commitment? I’m grateful to inspired leaders who lead us in the right direction where we can apply these skills. Grateful for the thoughts of leaders in the field like David Casarett, MD, MA who proposes an alternate method of delivering palliative care at home which does not force patients to give up curative treatments or have a prognosis of 6 months in order to get the care they need. And the work of CAPC and Diane Meier MD FACP who argue for expansion of palliative medicine instead of the limitation of it. And organizations like NHPCO’s Hospice Action Network who advocate for policies to ensure the best care for patients and families facing the end of life. Their recent activity at Capitol Hill aims to help maintain the quality care we deliver.
Because the care we deliver is still special. And the needs of our patients don’t always fit into a mold. Let’s not forget that.
Photo Credit: Heart Shaped Hands by nippe011
Friday, August 23, 2013 by Kristina Newport ·
Thursday, August 22, 2013
Famously attributed to Justice Potter Stewart, this phrase suggests that it’s not what you call it but how you perceive it that matters. (Actually, we prefer Sean Connery's use of the phrase in Goldfinger. You can probably check it out on cable tonight, or tomorrow, or this weekend, or...).
One of the risks of starting or growing a palliative care programs is that your constituents, both practitioners and patients, will interpret what that means in the context of their own biases. Too often, the first interpretation is that palliative care means hospice. It's something we all fight. And even if we can get practitioners to get past this hurdle, they can get pretty protective about how their patients are approached. Even if the practitioner knows better, it doesn't mean that the patients will understand. In both cases, I don't think you get the opportunity to have people get a chance to "...see it..."
In our practice, we had more than one failed attempt to integrate palliative care. But we didn't quit; and we didn't lament our failures. We learned from them. We learned that we needed to focus less on what we call it, and on finding ways to make it happen.
Hiring a certified cancer exercise specialist doesn't sound like starting a fledgling palliative care program...but it turns out it is. Focusing on quality of life and helping folks become more able to do what they used to do are central components of a solid palliative care program.
All too often fatigue is simply the way it is for patients with metastatic disease. After multiple treatments, numerous medical appointments and simply feeling terrible, patients spend a significant amount of time in bed dealing with or adding medications to deal with side effects. And that's simply the way it is. Is it really? Hardly.
Over 90% of patients with cancer report fatigue and there are very few solutions offered by traditional medical providers. We can focus on an education and solutions based approach that empowers patients and supporters under our three pillars of wellness; exercise, nutrition and mind/body activities. Why wellness? Wellness is defined as a healthy and proactive approach to living well and being healthy? In patients with metastatic disease? Absolutely!
We know that exercise is one of the most powerful tools to fight cancer related fatigue, but understandably, it’s a very daunting task for most patients. Much of the fatigue that patients experience is loss of lean muscle tissue which is required to complete every single body action from getting out of bed, making meals, working at a job, playing with kids you name it. These muscles are the rocket boosters of moving the body. We all know the use it or lose it saying, this is exactly what happens for our patients. In those with advanced disease, the fatigue is typically greater from the cumulative treatments where patients frequently have a lot of side effects, rest more and are active less. They lose muscle at an even greater rate. This loss often won't show up on the scale as frequently muscle is replaced with body fat.
A cancer specific wellness program shares not only the importance of exercise but how to do it. Education might include tips on chair based strength training the best starting point for deconditioned patient instead of walking, improving core and posture for patients with lung disease. Energy conservation and input from a dietitian are integral parts of cancer specific wellness programs. Whenever possible it is best to individualize support even exploring mind body activities, such as meditation, guided imagery and yoga. An introductory class can give patients a taste of all of these so they can have the tools to use what they feel is the most impact for them.
We didn't call what we did palliative care, and we certainly didn't tie any of these services to end of life care. But we certainly gave patients with metastatic disease part of their lives back and there is little doubt it was appreciated.
At the end of the day, that's palliative care...I know it when I see it.
John Hennessy is Vice President, Operations for Sarah Cannon, the global cancer enterprise of Hospital Corporation of America (HCA). His focus areas at Sarah Cannon are medical oncology, survivorship, and palliative care. He serves on the Board of Trustees of the Association of Community Cancer Centers (ACCC), and on several committees for the American Society for Clinical Oncology (ASCO), including the Clinical Practice Committee. This article was co-written with Sami Papacek a Certified Cancer Exercise Specialist at the University of Kansas Cancer Center.
Thursday, August 22, 2013 by John Hennessy ·
Wednesday, August 21, 2013
Paul Bisceglio (@PaulBisceglio) from The Atlantic featured some of these efforts and the newer trend of being very open about end-of-life issues online and in the public view in his article, "How Social Media is Changing the Way We Approach Death." The article is nearing over 1000 likes on Facebook in just over 24 hours, which is really impressive for what some might consider taboo. But what the article and the social media stats on this article tells us, as a field, is that people want to engage on this topic. What a call to us to make sure we are available not only online, but to our communities offline as well. We as professionals and advocates for quality care for those facing serious illness need to realize the power in sharing the stories and research that we find online.
Sharing is the first and easiest step. The next is commenting and adding to a fruitful discussion, whether on a blog, Facebook, or every Wednesday night (9p ET) at the #hpm tweetchat. Even though there are some uncivil places in the comment sections of some sites (not ours!) a smart and genuine comment can really add a lot to an article, so please ignore the loud barks from those impolite faux-raconteurs. And lastly you can contribute by adding original thought and content. I know there are some brilliant minds out there with great ideas to share. There are platforms to deliver your message, you just have to try.
* If you know any blogs not on the list, please share.
Photo Credit: Unknown
Wednesday, August 21, 2013 by Christian Sinclair ·
We are moving to a new email delivery system called MailChimp from the old delivery system Feedblitz. (Yeah, all new companies seem to have silly names. I can't stop them.). What does this mean for you?
1) No more random ads on the emails
2) Ability to choose your subscription frequency:
- Daily (Full Post)
- MWF (Full Post)
- Weekly (Digest Version - short snippet of each post in the past week)
by Christian Sinclair ·