Planning for future care may be linked to longer survival in terminally ill patients

by British Medical Journal

Credit: CC0 Public Domain

Sharing preferences for end of life care, known as advance care planning, may be linked to longer survival in terminally ill patients, suggests the first study of its kind, published online in the journal BMJ Supportive & Palliative Care.

15 dec 2019--Advance care planning enables adults to discuss wishes and priorities for their care, including stopping treatment to prolong life, when they are no longer able to do so.

But it's not known what impact this might have on survival in patients who are terminally ill.

The researchers used data from a previously published randomised controlled trial, which aimed to find out if advance care planning had any impact on meeting terminally ill patients' preferences for place of death.

This involved tracking the date of death for 205 terminally ill patients, 102 of whom had had a conversation about their preferences for end of life care with a doctor, and 103 of whom hadn't.

Around half the patients in each of the groups had advanced cancer, and half had been terminally ill with heart and lung conditions.

Additional analysis of these data showed that there was a difference in survival after a year of monitoring between those who had had this type of conversation and those who hadn't.

Nearly three out of four of those (73%) of those who had done so were alive after a year compared with over half (57%) of those who hadn't.

While there was no significant difference in survival between terminally ill cancer patients who had and hadn't had an advance care planning conversation, there was between those with other types of terminal illness, the analysis showed.

Among this group, nine out of 10 (90%) of those who had done so were alive after a year, compared with two thirds (67%) of those who hadn't.

By way of a possible explanation for this finding, the researchers suggest that this type of conversation helps these patients better understand the life-limiting nature of their illness.

This may change their views about having treatment that prolongs life, such as steroids, which, paradoxically, have been associated with a heightened risk of death and other illness—at least among those with serious lung disease, say the researchers.

The researchers didn't set out to look at the potential impact of advance care planning on survival, and this finding was a by-product of their research in a relatively small number of people, so requires further study, they say.

"[Advance care planning] was associated with a significantly improved survival among terminally ill patients, primarily [those] with non-cancer diseases. However, the analysis was explorative, and the association must be investigated further before drawing any firm conclusion," they conclude.

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More information: Advance care planning and longer survival in the terminally ill: a randomised controlled trial unexpected finding, BMJ Supportive & Palliative Care (2019). DOI: 10.1136/bmjspcare-2019-001906

Journal information: BMJ Supportive & Palliative Care 

Provided by British Medical Journal 

Many physicians not prepared for end-of-life talks with patients

While nearly all physicians say end-of-life conversations are important, many report lacking the training to have such conversations, according to a brief report published online May 23 in the Journal of the American Geriatrics Society.

22 jun 2018--Terry Fulmer, Ph.D., from the John A. Hartford Foundation in New York City, and colleagues conducted a 37-item telephone survey to measure attitudes and perceptions of barriers and facilitators to advance care planning among 736 physicians (primary care specialists; pulmonology, cardiology, oncology subspecialists) regularly seeing patients aged ≥65 years.
The researchers found that 99 percent of respondents agreed that it is important to have end-of-life conversations, yet only 29 percent reported that they have received formal training for such conversations. Younger physicians and those caring for a racially and ethnically diverse population were more likely to have had training. The strongest motivating factors in having advance care planning conversations were patient values and preferences. The vast majority of respondents (95 percent) reported supporting a new Medicare fee-for-service benefit reimbursing advance care planning. Time was the biggest barrier reported to advance care planning, as well as not wanting a patient to give up hope and feeling uncomfortable.
"Given the gap between what people want at the end of life and the care they receive, we need to build on available training tools and embed them systematically into practice," the authors write. "Addressing clinician barriers to advance care planning to meet the needs of their older patients and families requires the integration of existing, proven tools into a three-pronged strategy that includes education and training, formal systems, and reimbursement for these critical conversations."

More information: Abstract/Full Text (subscription or payment may be required)

Doctors reluctant to discuss end-of-life care with heart failure patients

Healthcare providers are reluctant to discuss end-of-life care with heart failure patients and their families because they feel uncomfortable broaching the topic or lack time, according to a new study presented at the Quality of Care and Outcomes Research 2014 Scientific Sessions.

06 jun 2014--Researchers surveyed 50 physicians and 45 nurse practitioners or physician assistants at three practices at the Mayo Clinic in Rochester, Minnesota and the Mayo Clinic Health System. Ninety-five clinicians completed the survey.

Among the findings:

• Only 12 percent of the healthcare providers reported having routine yearly discussions about end-of-life care as advocated by the American Heart Association.
• Thirty percent of the group reported having little confidence in discussing or providing end-of-life care.
• Among the 52 percent who said they felt hesitant mentioning end-of-life-care, 21 percent cited their perceptions that patients weren't ready to talk about the issue; 11 percent said they felt uncomfortable bringing it up; 9 percent said they worried about destroying a sense of hope; and 8 percent said they lacked time.

Healthcare providers were often unsure about who should bring up end-of-life care: 63 percent of heart failure specialists and 58 percent of community cardiology clinicians thought end-of-life care discussions were the responsibility of heart failure cardiologists, while 66 percent of primary care providers felt it was their responsibility.

Despite these perceptions, heart failure specialists and community cardiology clinicians were far more likely to have referred heart failure patients to palliative care within the past year than primary care physicians (89 percent versus 21 percent).

"Providers did express an interest in receiving additional training to develop the skills and confidence to talk about end-of-life care with their patients with heart failure," said Shannon Dunlay, M.D., M.S., the study's lead researcher and a cardiologist at the Mayo Clinic in Rochester, Minnesota.

There is no evidence that bringing up end-of-life care ruins hope, and it may ease anxiety for some patients and families, Dunlay said.

About 5.1 million Americans have heart failure and about half of those die within five years of their diagnosis, according to American Heart Association statistics.

"Communication is key but in many hospitals and health systems this can be difficult as patients often have multiple healthcare providers," Dunlay said. "Sometimes it's helpful to pick up the phone and have a provider-to-provider conversation so that everybody is on the same page. Incorporating end-of-life conversations into the ongoing, routine care of the patient is important as goals and preferences can change over time and patients and their families can feel more comfortable and confident in relaying their wishes to multiple providers."

Provided by American Heart Association

Most physicians would forgo aggressive treatment for themselves at the end of life

Most physicians would choose a do-not-resuscitate or "no code" status for themselves when they are terminally ill, yet they tend to pursue aggressive, life-prolonging treatment for patients facing the same prognosis, according to a study from the Stanford University School of Medicine to be published May 28 in PLOS ONE.

29 may 2014--It's a disconnect that needs to be better understood, said VJ Periyakoil, MD, clinical associate professor of medicine and lead author of the study.

"Why do we physicians choose to pursue such aggressive treatment for our patients when we wouldn't choose it for ourselves?" said Periyakoil, director of the Stanford Palliative Care Education and Training Program. "The reasons likely are multifaceted and complex."

In the study, Periyakoil and her colleagues set out to determine how physicians' attitudes have changed toward advance directives since passage of the Self-Determination Act in 1990, a law designed to give patients more control over determining end-of-life-care decisions. Advance directives are documents that patients can use to indicate end-of-life care preferences.

The study involved two sets of subjects: One comprised 1,081 physicians who in 2013 completed a web-based advanced directive form and a 14-item advance directive attitude survey at Stanford Hospital & Clinics and the Veterans Affairs Palo Alto Health Care System; the other comprised 790 physicians from Arkansas who were asked the same 14 survey questions—but did not complete an advance directive form—in a 1989 study published in the Journal of the American Medical Association.

Surprisingly, results showed that doctors' attitudes toward advance directives have changed little in 25 years.

"The needle has not moved very much," Periyakoil said, who is also associate director of palliative care services at the Palo Alto VA center.

The lack of change in physicians' attitudes toward advance directives mirrors what the study describes as the medical system's continued focus on aggressive treatment at the end of life, despite the fact that most Americans now say they would prefer to die at home without life-prolonging interventions.

"A big disparity exists between what Americans say they want at the end of life and the care they actually receive," the study said. "More than 80 percent of patients say that they wish to avoid hospitalizations and high-intensity care at the end of life, but their wishes are often overridden."

In fact, the type of treatments they receive depends not on the patients' care preferences or on their advance directives, but rather on the local health-care system variables, such as institutional capacity and individual doctors' practice style, according to the study.

"Patients' voices are often too feeble and drowned out by the speed and intensity of a fragmented health-care system," Periyakoil said.

Other results from the study showed that because of the Self-Determination Act, doctors now feel they are less likely to be sued for not providing the most aggressive care if a patient has an advance directive. The law requires hospitals to inform patients about advance directives, but it doesn't ensure that the directives be followed.

Physicians' attitudes toward end-of-life care also differed depending on their ethnicity and gender. Emergency physicians, pediatricians, obstetrician-gynecologists and those in physical medicine and rehabilitation had more favorable attitudes toward advance directives. Radiologists, surgeons, orthopaedists and radiation oncologists were less favorable. Caucasian and African American doctors were the most favorable; Latino physicians were the least favorable.

An overwhelming percentage of the 2013 doctors surveyed—88.3 percent—said they would choose "no-code" or do-not-resuscitate orders for themselves.

As a geriatrics and palliative care physician who sits at the bedside of sick patients herself, Periyakoil said she understands the disconnect between the type of care doctors want for themselves at the end of life and what they actually do for their patients. It's not because doctors are trying to make more money or because they are intentionally insensitive to their patients' desires. At the core of the problem is a biomedical system that rewards doctors for taking action, not for talking with their patients.

"Our current default is 'doing,' but in any serious illness there comes a tipping point where the high-intensity treatment becomes more of a burden than the disease itself," said Periyakoil, who trains physicians in palliative medicine. "It's tricky, but physicians don't have to figure it out by themselves. They can talk to the patients and their families and to the other interdisciplinary team members, and it becomes much easier.

"But we don't train doctors to talk or reward them for talking. We train them to do and reward them for doing. The system needs to be changed."

Provided by Stanford University Medical Center

An end-of-life 'conversation guide' for physicians to speak with patients

How does a doctor tackle the delicate issue of end-of-life care planning with a patient?

16 july 2013--With an aging population and people living longer with chronic illness, it is increasingly important for patients and family members to decide how they and their loved ones would like to spend their final days. And for physicians in both hospital and primary care settings, it is crucial that they know how to address this issue with sensitivity.

A new "conversation guide" in CMAJ (Canadian Medical Association Journal) aims to guide physicians through these sensitive discussions with patients in hospital and their family members.

Although primary care physicians have an essential role to play in advance care planning, this review focuses on physicians and patients in hospital.

"A stay in hospital presents an important opportunity for engaging in discussions about goals of care, because it signals a change in the trajectory of the patient's illness, giving increased relevance to these conversations, and because potential substitute decision-makers (e.g., the most involved family members) are often present," writes Dr. John You, Department of Medicine and the Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, with coauthors.

"By providing structured guidance, specific advice and practical tools, our aim is to increase clinicians' confidence in engaging in meaningful end-of-life communication with patients in hospital and their family members," they write.

The authors provide a framework that will help inform decisions based on:

• identifying patients at high risk of dying
• communicating prognosis
• clarifying patient values around the care plan
• involving substitute-decision makers in care planning
• documenting a patient's wishes.

"Clinicians should exercise judgment and flexibility in engaging patients and family members in these discussions, recognizing that determining goals of care is a process. For patients who have existing advance directives, this process may be straightforward; for others who may be less prepared, the discussion may best unfold in a phased approach, with initial introduction and probing of this issue early during the stay in hospital and more detailed follow up later on," write the authors.

They suggest that efforts should be made to increase public awareness outside hospitals about the importance of advance end-of-life care planning and the limitations of life-sustaining technologies.

More information: www.cmaj.ca/lookup/doi/10.1503/cmaj.121274

Provided by Canadian Medical Association Journal

Study demonstrates that earlier end of life care discussions are linked to less aggressive care in final days of life

A large population- and health systems-based prospective study reports earlier discussions about end of life (EOL) care preferences are strongly associated with less aggressive care in the last days of life and increased use of hospice care for patients with advanced cancer. The study, published November 13 in the Journal of Clinical Oncology, provides the first-of-its –kind scientific evidence that timing of EOL care discussions affects decisions about EOL care.

14 nov 2012--The findings suggest that initiating EOL care discussions before the last month of life provides the patients opportunity to make decisions regarding their EOL care preferences in a way that late discussions don't seem to do. Patients need time to process the information with their family and make good plans based on that information.

National guidelines recommend that oncologists initiate discussions about EOL care soon after a diagnosis of advanced cancer in order to ensure care aligns with patient goals and wishes. Current guidelines state that conversations should happen "during periods of relative medical stability rather than acute deterioration, and with physicians that know the patient well." In addition, ASCO's own recommendations for patients with advanced cancer include prioritizing discussions related to advanced cancer care preference upon diagnosis. This year ASCO also offered guidance on when oncologists should prioritize palliative and supportive care for patients with advanced cancer who have certain disease characteristics.

"Research has shown that choosing less aggressive care at the end of life offers important benefits for both patients and their caregivers. Patients have a better quality of life in their final days because there is a greater focus on symptom management, and they are more often able to receive care in their homes," said lead author Jennifer W. Mack, MD, MPH, a pediatric hematologist/oncologist at Dana-Farber/Children' Hospital Cancer Center. "This is also important because studies have shown that aggressive care is associated with a higher risk of depression among bereaved caregivers of cancer patients."

In the study, investigators identified discussions about hospice and resuscitation from with 1,231 patients (or surrogates of patients who were deceased or too ill to participate) with end-stage lung or colorectal cancer and via review of their medical records. They found that, on average, EOL discussions were initiated 33 days before death and 39 percent of those discussions occurred within the last 30 days.

Nearly half of all the study participants received at least one form of aggressive care, including chemotherapy in the last 14 days of life, intensive care unit (ICU) care in the last 30 days of life, and acute, hospital-based care in the last 30 days of life. However, compared with cases where EOL discussions took place within the last 30 days of life, cases with earlier EOL discussions were associated with less frequent use of aggressive care (34-45 percent vs. 65 percent) and increased use of hospice care (68-77 percent vs. 49 percent).

"Most patients who recognize that their cancer is terminal want to receive less aggressive care at the end of life," said Dr. Mack. However, aggressive care is still common in this setting, in part because discussions about the end of life are often postponed because they are difficult for both physicians and patients. This study also found that 17 percent of patients or surrogates did not recall EOL care discussions even though they were documented in the medical records, suggesting they may not have fully comprehended the content of the discussion.

The authors emphasize that more research is needed to explore how content of EOL care discussions affects patients' comprehension of the information and subsequent decisions made. In addition, the study underscores a need for a national emphasis from ASCO and many other professional and patient groups on advanced cancer care planning in physician education and training programs.

More information: www.jco.ascopubs.o… ull.pdf+html

Helpful Links from Cancer.Net, ASCO's cancer information website:

Guides to Cancer: http://www.cancer.net/cancer

Advanced Cancer Care Planning: http://www.cancer.net/coping/advanced-cancer-care-planning

Preparation at the End of Life: http://www.cancer.net/coping/end-life-care/preparation-end-life

Hospice Care: http://www.cancer.net/coping/end-life-care/preparation-end-life

When Caregiving Ends: http://www.cancer.net/publications-and-resources/oncologists-perspective/end-life-issues

Cancer.Net Podcast: The Art of Oncology – End-of-Life Care: http://www.cancer.net/coping/end-life-care/preparation-end-life

End-of-Life Issues: http://www.cancer.net/publications-and-resources/oncologists-perspective/end-life-issues

Provided by American Society of Clinical Oncology

Studies Investigate Health Care at End of Life

Feelings of abandonment, influence of communication and race on costs, among findings

14 mar 2009-- End-of-life health care may be associated with feelings of abandonment, and its associated costs are lower after physician-patient communication but higher among minorities, according to a series of studies published in the Mar. 9 issue of the Archives of Internal Medicine.

Anthony L. Back, M.D., of the Fred Hutchinson Cancer Research Center in Seattle, and colleagues interviewed 55 terminally ill patients, along with their physicians and caregivers. Two themes were identified through these interviews: a loss of continuity between the patient and physician contributed to concerns of abandonment prior to death, and a lack of closure resulting in feelings of abandonment among patients and families at the time of death or after. Linda Ganzini, M.D., of the Portland Veterans' Affairs Medical Center in Portland, Ore., and colleagues found that worries of future physical discomfort and loss of self-sufficiency are important motivations for considering physician aid in dying among 56 Oregonians surveyed.

Baohui Zhang, of Harvard Medical School in Boston, and colleagues report that patients with advanced terminal cancer who had an end-of-life conversation with their physician had significantly lower health care costs during their final week of life compared with those that did not ($1,876 versus $2,917, respectively). Higher costs in that final week were significantly associated with a worse quality of death. Amresh Hanchate, Ph.D., of the Boston University School of Medicine, and colleagues found that end-of-life costs were 32 percent and 57 percent higher for blacks and Hispanics, respectively.

"At life's end, black and Hispanic decedents have substantially higher costs than whites. More than half of these cost differences are related to geographic, sociodemographic and morbidity differences," Hanchate and colleagues write.

An author of the final study reports a relationship with DxCG Inc., whose company's software was used to measure morbidity burden.

Abstract - Back
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Abstract - Ganzini
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Abstract - Zhang
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Abstract - Hanchate
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