This year's Annual Assembly featured more than 139 sessions—pre-cons, concurrents, symposia, paper sessions, plenaries, "rounding with the stars" and a service of remembrance—for conference attendees to enjoy. Paralleling a year marked by a growing recognition and the advancement of palliative care, this year's distinguished plenary speakers spoke on a variety of topics that presented a comprehensive summary of hospice and palliative medicine, the latest research, and a look at a couple of published works that reflect the value of end-of-life care.
- The Nature of Pain and Suffering
- Palliative Nursing Helps Patients Express Suffering
- Columnist Shares Reflections on The Last Lecture
- African Palliative Care Programs Carry the Field Forward
- Comic Strip Garners Support for Breast Cancer Research
- 2009 AAHPM & HPNA Annual Assembly State of the Science Plenary Session
- Exceptional Clinical Content Closes Assembly
- 2009 Award Winners
- 2009 AAHPM Fellows
- Thank You for Helping Us "Go Green"
- Full Recordings Available for Purchase
- Photos of AAHPM & HPNA Annual Assembly Available for Purchase
- 2010 AAHPM & HPNA Annual Assembly
- Upcoming Educational Events
The Nature of Pain and Suffering
Nearly 40 years ago, Eric Cassell, MD, joined the Task Force on Dying at the Hastings Center. It was an experience, he told conference attendees, that altered the course of his career. "I wondered if you can take care of a patient when the problem is the dying, not the disease." What he found was that one not only could but should do just that.
Dr. Cassell and Betty Ferrell, RN PhD FAAN, spoke about the nature of pain and suffering to a packed ballroom during the opening plenary session of the 2009 AAHPM and HPNA Annual Assembly. Cassell discussed the high expectations patients have of their physicians, remarking that "people depend on the expert knowledge of physicians, who are expected to know how to treat the patient's disease." Physicians should focus on each particular person, not just their disease. Patient care, then, should be focused not only on pain and suffering management, but also on the body, mind, and spirit, because each aspect of the body has an impact on the rest of the person.
"The meaning of distress is as important as the symptoms themselves," Cassell said. The importance of finding the cause of pain was also stressed throughout Cassell's presentation. Suffering is a type of distress that happens when patients feel their illness has taken away their sense of wholeness and is typically marked by self-conflict, loss of purpose, and loneliness. When their feeling of wholeness, or intactness, is taken away, patients feel vulnerable and often fear they will never achieve good health again.
Because suffering is personal and unique to each individual, the easiest way to find out if a patient is suffering is to just to ask them. Pain is more than just the symptom, Cassell said. "It is what it does to that person and what it means to be in unrelieved pain." Symptoms may be relieved but suffering continues anyway. It is up to the physician to determine what is at the root of the patient's suffering.
Cassell noted, "Physicians are not bystanders; they are there to make people feel better." The following are a few of his tips for doing so:
- Be present. For you to be present, you must be present. Running off or being focused on a pager will not help the patient.
- Touch. When you are there and concerned, the reassurance of human touch is natural and can help calm the patient's fears.
- Listen. An attentive listener does not leave until he is sure of what was said and stores that information for future visits.
- Address the patient. Don't loom over the bed but do use a manner of speaking that is clear to the patient.
- Keep the patient informed. Don't expect patients to make decisions about whether or not they want to be resuscitated.
- Remember the family. Look after the family, too, because they will be the ones suffering when the patient dies.
- Prognosticate. Predict what will happen with the patient's symptoms and explain why. You won't always be right, but make that effort to prognosticate. It will help address their suffering.
"If you treat all sick patients this way, you have a very good chance of preventing suffering," Cassell closed. "Treating patients this way and staying with them until they are better will teach you about suffering, but more important, it will teach you about being a human being." Listen to a sample of Cassell's presentation from AAHPM's and HPNA's opening plenary session here (mp3).
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Palliative Nursing Helps Patients Express Suffering
"We enter patients' lives at a time when they are often mute," Betty Ferrell, RN PhD FAAN, said. "Through our care, through our listening, through our presence, through our attention—we give people the ability to express their suffering."
Ferrell noted that the specialty of hospice and palliative care exists because those involved recognize that there is a better way to die. "We serve as expert witnesses. We have the ability to speak before Congress, the public, board of directors, and our communities and speak about what it means to be ill or dying in a country that is focused only on the cure and the absence of disease." In the opening plenary, she spoke about the advancement of the field, the tenets of suffering, and the role of nursing to relieve suffering.
"The field of palliative care nursing is advancing tremendously," Ferrell said, "not only in our clinical excellence but also in our scholarship. We have senior investigators as well as newer investigators in the field who have contributed tremendously to the evidence base." She highlighted the works of Betty Davies, who wrote on the theme of "fading away" and the grief of siblings and fathers of dying children, and those of Anne Hughes, who wrote about the dignity of terminal illness in the poor and homeless in San Francisco. Maryjo Prince-Paul also wrote probing works on the connection between social and spiritual well-being for those who have terminal illness.
In addition to these contributions to the literature, Ferrell said it is important to define what suffering means to patients. She described suffering as intensely personal, often associated with loss, and sometimes described as a loss of control. Suffering, she further defined, is often accompanied by a host of other emotions, including the contemplation of our own mortality and the emotions that brings about.
"Attention to suffering is the shared work of all of us in palliative care," she said. Nurses have the opportunity to be with their patients nearly every step along the way, and in doing so, can provide care and comfort to alleviate their suffering. They are able to help strike a balance between independence and dependence for their patients. Perhaps equally important, they are in the position to help people begin to deal with the inevitability of a terminal illness. "Nurses help people understand how to let go while holding on tight to those they love," Ferrell said. Listen to a sample of Ferrell's presentation from AAHPM's and HPNA's opening plenary session here (mp3).
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Columnist Shares Reflections on The Last Lecture
Randy Pausch, a happily married father of three young children, learned that his pancreatic cancer had become terminal in August 2007. The Carnegie Mellon University professor had an opportunity to give a "last lecture" before leaving his position to spend his final months enjoying life with his family. A video of the lecture reached millions online, and Wall Street Journal columnist Jeffrey Zaslow teamed up with Pausch to write a book that would encapsulate the wisdom and lessons Pausch shared during his lecture. Pausch's and Zaslow's book, The Last Lecture, became an instant bestseller, and hundreds attended a special event with Zaslow at the 2009 AAHPM & HPNA Annual Assembly, where Zaslow spoke of his brief but unforgettable friendship with Pausch, both of whom were awarded AAHPM's 2009 Humanities Award.
"I've been writing for 30 years and no story has ever equaled the story of Randy Pausch," Zaslow began. Zaslow recalled how uncertain he felt when he first spoke with Pausch on the phone when he was deciding whether or not to attend Pausch's lecture. "All of you know what it is like to talk to people who are dying," Zaslow told the audience, "but I was not familiar with that; I was actually kind of uncomfortable with it." However, he said Pausch's easy-going spirit and sense of humor quickly put him at ease.
"I'm going to keep having fun every day I have left," Randy said in his lecture, "because there's no other way to play it." After Zaslow's column about the lecture ran in the Wall Street Journal, many wrote to Zaslow and Pausch to share how their lives had been changed by hearing Randy's inspirational words and attitude for handling a grim medical prognosis. The unexpected popularity of the column prompted Pausch to coauthor a book with Zaslow sharing stories from his lecture and his experiences since then. As Zaslow explained, the book is not so much about Randy dying as it is about how to really live.
Once Randy learned his cancer was terminal, he began interviewing nurses for his hospice care. "It is the highest calling," Randy said of the physicians, nurses, and social workers who provide hospice care. Zaslow noted in his presentation that hospice allows the patient the opportunity to say goodbye, which was one thing Randy had been particularly grateful for. Dying of pancreatic cancer, rather than a sudden heart attack, Zaslow said, had allowed Pausch the opportunity to tie up loose ends before he died.
The actual last lecture and subsequent book were never about the audience or the millions who might purchase the book. Those were for his kids, Randy wrote in the book, so they would someday have concrete and lasting words from him. Zaslow explained that Randy's philosophy was not to dwell on his situation, because he couldn't change it. "If you flip a coin and it comes up tails and you called heads, that's not unfair," Pausch told his children. "That's just the way the world works. We all stand on the dartboard, and a very small percentage of us are going to catch the dart labeled pancreatic cancer."
"I like to think of Randy at the end doing just what he started out doing in the beginning," Zaslow said. "The day after he died, his son Dylan came up to Randy's friend Steve, who was sitting in Randy's living room, and asked 'Is cancer solvable?' So Steve replied, 'Well, some cancers are tough; pancreatic cancer is really hard.' And Dylan replied, ‘Oh. The other day my dad told me I have it in me to solve problems.'" A video clip from Jeff Zaslow's presentation can be downloaded here (mp4). (Note: You may need to download QuickTime to view this file. Click on the "Free Download Now" button on the QuickTime homepage. Once QuickTime is installed, if you're using Internet Explorer, right click on the (mp4) link above and select "Save target as" and save it to your desktop. Then click "open" to view video clip.)
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African Palliative Care Programs Carry the Field Forward
Faith Mwangi-Powell's presentation asked the progressive question "What can we do to scale palliative care in Africa?" Mwangi-Powell spoke on the challenges practitioners face in providing palliative care and the great strides forward that have occurred in recent years. "We are the babies of palliative care, but we have a big mission on our shoulders, and we are so delighted and privileged to be leading the continent of Africa in moving palliative care forward," she said.
Many positive developments have occurred in recent years to further the availability and quality of palliative care in African countries. There has been an increase in hospices, government involvement, faith-based and mission hospitals, and national palliative care associations. Mwangi-Powell called the development of national associations "especially exciting" because "countries and providers are coming together and saying they want to be the forum for providing palliative care in Africa." She also praised the regional African palliative care associations, which began around 2003 and comprise many motivated individuals who are committed to expanding and improving palliative care in Africa.
Those accomplishments are the result of the tremendous efforts put forth in spite of many challenges presented to the healthcare system. The expansive size of the continent itself—approximately 30 million square kilometers spanning 47 countries—presents challenges to providing coverage. Mwangi-Powell presented the audience with numbers demonstrating the challenges Africa faces in providing health care. In 2004 an estimated 826 million people were living in Africa, and 65% of the world's patients with HIV/AIDS lived in Africa. Alternatively, Africa has less than 5% of the global resources and 0.1% of the healthcare budget.
Critical palliative care issues include the low number of palliative-trained care providers and the limited availability of morphine. In some countries, there is only one doctor per 500,000 people who can prescribe morphine—making it impossible to adequately treat everyone's pain. This is a primary advocacy item in Africa. In Uganda, Mwangi-Powell said, they have developed a national policy for palliative care, and they have created a 9-month clinical palliative training course that would allow those who complete it to prescribe morphine for palliative care.
With these challenges come many opportunities. Support is needed for the people who struggle with understanding why they have contracted a deadly disease and for those who care for these patients. Policy issues, drug availability, education, and implementation are all on the docket for continuing progress in the field. Mwangi-Powell said they have worked with the deans of universities to advocate for the integration of palliative care into the curriculum in a more substantial manner and reported that "we had a big conference with all the deans of about nine countries last year and right now four universities have called us and said they want to welcome palliative care instruction."
In spite of so many challenges, the mission to bring quality palliative care to African countries is achieving success due to the many people who are passionate about bringing palliative care to Africa. Partnerships, Mwangi-Powell emphasized, provide a wonderful opportunity for collaborating and sharing resources. Mwangi-Powell closed her presentation with an invitation to attendees to consider sharing their talents with physicians in Africa.
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Comic Strip Garners Support for Breast Cancer Research
Popular comics writer Tom Batiuk said he would have to go back many years to share how the tale of Lisa's Story began. "The angel Gabriel appeared before me, and said, ‘God has said that from now on, the cartooning commandments no longer apply to you. In other words, you can break all the rules.'"
Lisa's Story required Batiuk to break many comic strip rules created during his long-running comic strip "Funky Winkerbean." Batiuk's journey with Lisa began when he was writing about her being a pregnant teenager. Discussing issues like teenage pregnancy, cancer, and death in the comic series was not typical for comic strips, but Batiuk found that there was an audience for it. With that knowledge in hand, he aged the characters to their twenties, and explored how their relationships would withstand the test of time and fate.
In 1999 he diagnosed his character, Lisa, with breast cancer. He said the idea came about from the good work so many breast cancer awareness groups were doing; he wanted to help provide another context for people to talk about it. Like her earlier pregnancy, Lisa's experience with breast cancer proved there was an audience for this material. Batiuk was planning on moving on from that storyline after Lisa successfully reached remission, but then he himself was diagnosed with cancer.
"I realized there was a huge void between sympathizing with someone's situation and feeling it yourself," he said. Having experienced the trauma of going through such a difficult disease, he felt there was much in the story that originally went untapped, so he reopened the storyline. Throughout the strip, he tried to infuse some of the moments he remembered from his own treatment experiences, writing them into the story with a humorous lift. One example poked fun at the difficulty of reimbursing medical procedures with insurance companies. In one strip, Lisa receives a bill from the hospital for a recent procedure, but her insurance provider, "DenialCare," refused the claim, citing that the tendency of the equipment (ie, a lightbulb) to burn out was a preexisting condition.
The series takes a serious turn when Lisa learns her cancer is terminal. She makes the decision to fully live what life she has left rather than continue the hard-hitting treatment that makes her ill. Batiuk said he used this opportunity to include a few messages he felt were most important, incorporating the importance of early screening and hospice care, which he had been impressed with since seeing the difference hospice care made for friends and family. Batiuk earlier told the audience he had always wanted to draw superheroes in his comic strips, but the opportunity to live out his childhood fantasies finally came with his strip about hospice. "When it came time to portray the hospice nurses, I portrayed them as superheroes. It was a slight way to deflect the situation, and it was a chance to depict people who I saw in life as real superheroes."
Readers, Batiuk said, were on the whole very supportive of the direction he took with the strip. "In the comic strip, I sent Lisa to Washington to testify before Congress about the need for more money for cancer research. As Lisa put it, "We can't give up the fight now; this is a war we can actually win."
A university in Cleveland has created a fund called Lisa's Legacy that benefits cancer research. All of the proceeds from his book Lisa's Story benefit the Lisa's Legacy Fund.
Reprinted with permission from Tom Batiuk. ©2007 Batom, Inc.
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