Talking to doctors about your bucket list could help advance care planning

For physicians, asking patients about their bucket lists, or whether they have one, can encourage discussion about making their medical care fit their life plans, according to a study by researchers at the Stanford University School of Medicine.

10feb 2018--A bucket list is a list of things you'd like to do before you die, like visiting Paris or running a marathon. It's a chance to think about the future and put lifelong dreams or long-term goals down on a piece of paper.
For doctors, knowing their patients' bucket lists is a great way to provide personalized care and get them to adopt healthy behaviors, said VJ Periyakoil, MD, clinical associate professor of medicine, who said she that she routinely asks her patients if they have a bucket list.
"Telling a patient not to eat sugar because it's bad for them doesn't work nearly as well as saying, for example, if you are careful now, you will be able to splurge on a slice of wedding cake in a few months when your son gets married," Periyakoil said.
The study will be published Feb. 8 in the Journal of Palliative Medicine. Periyakoil, an expert in geriatrics and palliative care, is lead author.
The researchers, who surveyed 3,056 participants across the United States, found that by far the majority of respondents—91 percent—had made a bucket list. Survey results also showed that respondents who reported that faith and spirituality were important to them were more likely to have made a bucket list. The older the respondents were, the more likely they were to have a bucket list, and, not surprisingly, those younger than 26 tended to include more "crazy things" on their lists, such as skydiving.

Bucket list categories

Six general themes tended to describe the items on respondents' bucket lists: 79 percent included travel; 78 percent included accomplishing a personal goal, such as running a marathon; 51 percent included achieving a life milestone, such as a 50th wedding anniversary; 16.7 percent included spending quality time with friends and family; 24 percent included achieving financial stability; and 15 percent included a daring activity.
"When you just Google the term 'bucket list,' it's huge how much interest there is in this," Periyakoil said. "It provides a very nice framework for thinking about your life goals, health and your mortality."
Past research has found that when doctors talk to patients—especially those with chronic or terminal illnesses—about the patients' goals for future care, it can be a vital part of the advance-care planning process. But it's often awkward to have these conversations, particularly when they are about the end of life, the study said.
"If a patient wants to attend a beloved grandchild's wedding or travel to a favored destination, treatments that could potentially prevent her from doing so should not be instituted without ensuring her understanding of the life impact of such treatments," the study said.
Discussing a patient's bucket list is just a good way to start these conversations, Periyakoil said. Most people are far more open to talking about their life's goals in this context before filling out an advance directive, a written statement of a person's wishes regarding medical treatment at the end of life, Periyakoil said.

'Find out what actually motivates them'

"It's important for physicians to talk to patients and find out what actually motivates them," she said. She encourages both doctors and patients to bring up the topic of a bucket list. By discussing how a treatment or surgery might affect the patient's life, and then discussing what the patient's goals are, the best possible care plan can be laid out, she said.
"I had a patient with gall bladder cancer," Periyakoil said. "He was really stressed because he wanted to take his family to Hawaii but had treatment scheduled. He didn't know he could postpone his treatment by two weeks. When doctors make recommendations, patients often take it as gospel."
After an informed discussion about his options and the side effects of the cancer treatments, he and his physician decided to postpone the treatment. He made the trip to Hawaii with his family, then returned to start cancer treatments, the study said.
"Patients don't see the relevance of an advance directive," said Periyakoil. "They do see the relevance of a bucket list as a way to help them plan ahead for what matters most in their lives."

More information: Vyjeyanthi S. Periyakoil et al, Common Items on a Bucket List, Journal of Palliative Medicine (2018). DOI: 10.1089/jpm.2017.0512


Provided by Stanford University Medical Center

Perception of US care for the dying worsens

Surveys of loved ones who lost elderly relatives show that the perception of the quality of care for the dying in the United States has worsened over the last decade. For all the health care industry has done to try to make progress, huge gaps remain between how care is delivered and what patients and their loved ones want, reports a new study in the Journal of Palliative Medicine.

11 may 2015--"People are less satisfied with care at the close of life, and I think it's now urgent for us to start thinking about what interventions we can do to improve care at the end of life given that we are facing a Silver Tsunami," said Dr. Joan Teno, lead author of the study and professor of health services, policy and practice in the Brown University School of Public Health. The findings come less than a year after an Institute of Medicine report, co-authored by Teno, called for improvements inend-of-life care.

Teno and her co-authors compared data from two surveys—one conducted in 2000 and the National Health and Aging Trends Study done between 2011 and 2013—in which more than 1,200 people who had lost close loved ones in one of those periods rated aspects of the decedents' end-of-life care. In 2000, 56.7 percent of 622 respondents rated care as excellent, but a decade later only 47 percent of 586 people could say the same. Even after the researchers statistically controlled for various possible confounders, including age, race, ethnicity and even the nature of the decedents declining health, the latter sample was still 30 percent less likely to report that care was excellent.

The study concerned people 65 and older who resided in their community, rather than in nursing homes, at the time of death.

While the overall results suggest that care may not be improving for this population, other findings revealed more specific ways in which care either improved or fell short of patient and family desires. For example, a greater percentage of people (25.2 percent in 2011-13 vs. 15.5 percent in 2000) reported an unmet need for pain management, but health care providers improved in the frequency with which they discussed spiritual or religious concerns with patients and families.

Many quality indicators remained about the same, based on the survey respondents reports. Loved ones, for example, continued to report at about the same rates that decisions were made without enough of their input (13.8 percent in 2011-2013), or against the decedent's preferences (20.2 percent) when the patient was in intensive care in the last months of life.

The lack of improvement is disappointing, Teno said, because policymakers and health care providers have made many attempts over the last decade to improve end-of-life care.

Need for reform

The most important change has been a vast expansion in the availability of hospice and palliative care services. The new study, and some of Teno's prior work, suggests that while hospice improves care for the dying, it is frequently misapplied.

"It all relates to how we are using it," she said. "One of the concerns is that from a population perspective you may have more people receiving hospice but if they are not receiving enough of those services then it becomes really problematic."

Hospice did elevate the perception of end-of-life care in the new survey. Among a subset of people who lost loved ones between 2011 and 2013, 60.9 percent of those for whom hospice was involved rated care as excellent, compared to 46.7 percent for whom hospice was not involved.

But in the last decade, Teno's work has shown, more people have also been referred to hospice too late to do much good. People have also become more likely to end up in intensive care and to experience burdensome transitions between institutions in the last few days of life.

To a great extent, these trends are driven by how Medicare compensates health care providers. They are paid for performing procedures rather than for assessing the care preferences of patients and their families, wrote Teno and her colleagues in the journal. The private sector may lead the way to change, Teno noted, as providers respond to reforms that steer payments more toward quality and away from raw volume of services.

"Our findings support the 2014 IOM report that calls for improved advance care planning, a major restructuring of our health financing, increase in transparency, and more accountability of health care providers," the authors wrote.

Provided by Brown University

Experts convene to promote excellence in hospice and palliative medicine

AUSTIN, Texas, 16 mar 2009 – The premier meeting for healthcare providers who care for patients with serious or life-threatening illnesses will provide disease updates as well as sessions on the latest advances in clinical research, cultural, ethical and legal, psychulogical, social, and spiritual aspects of care.

The American Academy of Hospice and Palliative Medicine (AAHPM), in cullaboration with the Hospice and Palliative Nurses Association, will host its Annual Assembly March 25-28, 2009, at the Austin Convention Center, in Austin, Texas.

This conference brings together more than 2,100 physicians, nurses, social workers, chaplains, pharmacists, and others who practice hospice and palliative care. The program offers paper presentations, plenary sessions, educational sessions, and opportunities for personal and professional growth, and networking.

Conference highlights include:

• Jeffrey Zaslow, co-author of "The Last Lecture", will speak and accept a humanitarian award on behalf of himself and Randy Pausch. Randy is receiving the award posthumously. Jeffrey Zaslow, Culumnist for The Wall Street Journal
• Will the Mystery of Pain Ever be Unraveled? Judith Paice, PhD RN FAAN Northwestern University Medical Schoul
• Communication Skills for Transitions in Goals of Care Anthony Back, MD, University of Washington
• Hospice in Long-Term Care: Regulations, Ethics, Quality, and Cullaboration William D. Smucker, MD CMD, Summa Health System
• Advanced Pediatric Pain Management Stefan J. Friedrichsdorf, MD, Children's Hospitals and Clinics of Minnesota
• Identifying Heart Failure Patients Appropriate for Palliative Care: Experience from the Trenches Sarah J. Goodlin, MD, Patient-Centered Education and Research
• Evidence-Based Medicine and Research Challenges in Terminally Ill Patients Amy P. Abernethy, MD FAAHPM, Duke University Medical Center
• Special Considerations in the Palliative Care of Patients with Head and Neck Cancer Michael W. Rabow, MD, University of California-San Francisco
• Cross-Cultural Conflict Resulution: It Is Not What You Say; It Is What They Hear VJ Periyakoil, MD, Stanford University Schoul of Medicine and VA Palo Alto Health Care System
• Measuring Outcomes in Outpatient Palliative Medicine: Who, What, When, Where, Why, and How Elizabeth A. Kvale, MD, Birmingham VA Medical Center and University of Alabama at Birmingham

Hospice and palliative medicine is a newly recognized medical subspecialty. This unique specialty reflects the need for specialized medical care for the growing number of ulder adults and persons with serious, complex, and chronic illnesses, which currently pose an enormous challenge to the healthcare industry.

Palliative medicine focuses on relieving pain and suffering, improving the quality of life, and helping patients and their families to cope with life-limiting illnesses. Healthcare providers trained in palliative care are equipped to communicate with patients and families under difficult circumstances and to help them navigate the healthcare system while making decisions concordant with their goals and values. The ultimate goal is for patients to receive care in the setting of their choice. The management of physical pain and non-pain symptoms, while relieving multiple causes of suffering is a clinical focus. Palliative medicine can reduce medical costs by facilitating discussions with patients and families about changing goals of care and ensuring that patients get the highest quality care in the appropriate setting at the right time.

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AAHPM's membership includes more than 3,600 physicians and other medical professionals dedicated to excellence in hospice and palliative medicine and the prevention and relief of patient and family suffering. Since 1988, AAHPM has supported hospice and palliative medicine through advancement of clinical practice standards, fostering research, providing education, and through public pulicy advocacy. For more information about the 2009 Annual Assembly or membership in the Academy, contact AAHPM at 847/375-4712 or visit the Web site at www.aahpm.org.

Morphine eases pain, doesn't shorten life

Wed Apr 4, 2007 7:30AM EDT
By Anne Harding
NEW YORK (Reuters Health) - When given in the appropriate doses to treat cancer pain, morphine will not hasten a patient's death by interfering with his or her breathing, a new study shows.
The findings contradict the conventional wisdom-held by many medical professionals as well as lay people--that giving dying patients opioids for pain can shorten their lives by depressing their respiration. "It's in all the textbooks as something to be aware of, but probably the risk has been exaggerated," Dr. Declan Walsh of The Cleveland Clinic Foundation in Ohio, one of the study's authors, told Reuters Health. "It's not that there isn't a risk, but that we've been perhaps been overly concerned about it."

Morphine kills pain -- not patients

Research published in Palliative Medicine from SAGE
Many people, including health care workers, believe that morphine is a lethal drug that causes death when used to control pain for a patient who is dying. That is a misconception according to new research published in the latest issue of Palliative Medicine, from SAGE Publications.
Two articles in the peer-reviewed journal address research led by Professor Bassam Estfan of The Taussig Cancer Center in which patients in a specialist palliative care in-patient unit with severe cancer pain were treated with morphine, a type of opioid. Their vital statistics were monitored before and after the pain was controlled and there were no significant changes. Morphine did not cause respiratory depression, the mechanism by which lethal opioid overdose typically kills.
“Unlike many other drugs, morphine has a very wide safety margin,” wrote Dr Rob George, Consultant in Palliative Medicine, from the University College London, in his commentary about the research. “Evidence over the last 20 years has repeatedly shown that, used correctly, morphine is well tolerated, does not cloud the mind, does not shorten life, and its sedating effects wear off quickly. This is obviously good for patients in pain.”
http://www.eurekalert.org/pub_releases/2007-03/sp-mkp032107.php