end of life
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.
by Joanna Fief
I’ve been hearing about the need for improved end-of-life care since I was a kid. My mom was a hospice nurse for many years and always talked about the importance of broader and earlier access to palliative care for patients and their families.
I never dreamed my work would overlap with hers, but for the past few years I’ve been working with The Regence Foundation, a grantmaking organization in the Pacific Northwest focused on increasing awareness and improving access to palliative care. Mom is proud of me, and I feel very lucky to work in a part of the country that is so ahead of the curve when it comes to end-of-life care.
Or is it?
Last month, The Regence Foundation partnered with National Journal, a media organization in Washington D.C., to poll people in the Pacific Northwest on their attitudes toward end-of-life care and how they compare with the rest of the country.
My gut feeling was confirmed. People here are generally more aware of and open to discussing end-of-life care options than other Americans. However, the poll also showed that, just like the rest of the nation, many still aren’t familiar with the term “palliative care.” Plus, about half said that information about palliative care is “available, but only if you know where to look or who to ask.” The Regence Foundation wants to change that.
For me, the key takeaway is that, regardless of geography, when people know what palliative care is, they want it, and I love that part of my job is to help them know what it is and how to access it.
Joanna Fief works at The Regence Group, a total health solutions company. The company’s foundation is called The Regence Foundation, which is working to improve access to palliative care.