Posts tagged long-term illness

President Crossno’s Letter to American Medical News

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

What Is Palliative Care?

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.

Strawberry Shakes, an Ocean View and a Wedding

by Jen Fuhrman-Kestler, AAHPM e-Marketing Manager

“FYI…we’re getting hitched tomorrow.”

This was the text I received from my fiancé as I sat in the opening session of a membership and marketing conference. Although he made me chuckle with his deliberate flippant wording, I quickly understood the significance of what was about to happen within the next 24 hours.

My now mother-in-law, Barb, has been in poor health for the past few years, and has gone through a myriad of medical treatments for her many different serious illnesses. After a stay in the ICU, she decided to move to hospice.

Being an employee of AAHPM, and advocate of palliative care, I was pleased with her decision to focus on quality of life and relieved that her uncomfortable symptoms would be managed.

The team at Shell Point Hospice has helped align a care plan with my mother-in-law’s goals. She is a strong and independent woman, never afraid to voice her opinion. Her first request was a view of the water. Her room on the fourth floor overlooks a lagoon filled with manatees, dolphins and tarpon. After being in the ICU and limited to a few spoonfuls of ice chips, nothing sounded better to her than a strawberry milkshake. Removing all the limitations and restrictions and allowing her to enjoy her remaining days has made Barb very happy, but the greatest gift Shell Point was able to give her was perhaps the most unconventional.

When Barb’s prognosis meant that she would not be able to make our late July wedding, Shawn and I decided to bring the wedding to her. After my conference, I got the first flight to Fort Myers. The next morning, we stopped by the Publix to pick up some flowers and a small cake. When the woman at the bakery asked if the cake was for a special occasion, and we answered “our wedding,” she looked as if she didn’t believe us. We arrived at the hospice and spoke with the chaplain, Dewey. He quickly got to know Shawn and me, and within a half an hour, we had a ceremony. Michelle, the social worker, took photos, and three of Barb’s closest friends joined her to witness our promise to spend the rest of our lives making one another happy.

We are so grateful that we could share our wedding with Barb, and so appreciative of the work done by the hospice team to accommodate our rather unusual request. It was a tear-filled day, but each one shed was the result of love. Barb was beaming and counted it as one of the single-greatest joys of her life. Shawn and I were beaming too.

Long-Term Illness Discussion Inspires

Dr Periyakoil initially gave us the choice of either listening to her lecture, or of having her lead a group discussion. The group opted for the lecture but as it ended we were in a giant discussion, and we had all learned something about how not only their families, but our patients with Long Term Illness grieve, too – for all that they have lost – and that their grief (a normal part of LTI) can mask and mimic depression, which is not normal and can and should be treated, no matter how late it is found. Depression in LTI is underdiagnosed and undertreated; incidence is 22 to 77%, so if you have four LTI patients, at least one of them is depressed and needs treatment.

Discussion ensued: depression can overlap with grief; normal dying can have features of both. How to tease out the depressed ones? Depression scales – rating systems which can be used by nonpsychiatrists to identify patients who are likely depressed – were presented, leading to the TIGDS (terminal illness grief depression scale) which isn’t perfected yet. Nor is our presentation of the possibility to our patients, who usually deny depression because of its stigma. Three video clips illustrated very different patients with simple anxiety, depression, and acceptance of terminal illness – which was inspiring.

James Condon, MD