Early Palliative Support Services Help Those Caring for Patients with Advanced Cancer

Dartmouth researchers have found that those caring for patients with advanced cancer experienced reduced depression and felt less burdened by caregiving tasks when palliative support services were offered soon after the patient’s diagnosis. They presented their findings at the American Society of Clinical Oncologist (ASCO) annual meeting in Chicago on June 3, 2014.

“Family caregivers are a crucial part of the patient care team. Because the well-being of one affects the well-being of the other, both parties benefit when caregivers receive palliative care,” said senior study author Marie Bakitas, DNSc, associate professor of Medicine at the Geisel School of Medicine at Dartmouth and L. O'Koren Endowed Chair and Professor at the University of Alabama School of Nursing in Birmingham. “We found that when caregivers began receiving palliative care support around the time of the patient’s advanced cancer diagnosis, they had less depression, perceived themselves to be less burdened by performing caregiving tasks, and had a better quality of life.”

The findings presented at ASCO were part of a larger ENABLE (Educate, Nurture, Advise, Before Life End) study on palliative care. Bakitas presented the patient outcomes from the ENABLE III study. The lead author on the caregiver study, J. Nicholas Dionne-Odom, Ph.D., RN, co-investigator formerly of the Geisel School of Medicine at Dartmouth and currently a postdoctoral fellow in the UAB Cancer Prevention and Control Training Program and researcher in the School of Nursing, presented on the caregiver outcomes.

For the caregiver section of the study, 122 family caregivers of patients with recurrent or metastatic cancer received palliative care support over the phone with an advanced practice nurse specially trained in delivering palliative care. The phone sessions covered common caregiving challenges including how to use creativity, optimism, planning, and expert information to manage problems; how to effectively partner with the cancer patient to manage symptoms; self-care (healthy eating, exercise, and relaxation); how to build a support network; and decision making and advance care planning. After these sessions, the caregivers received monthly supportive care follow-up phone calls. One group of caregivers started this phone-based program within two weeks of agreeing to participate in the study, while the other group started 12 weeks later.

The study results suggest that the earlier palliative care services are introduced to caregivers, the better they will be able to cope with the caregiving experience. Researchers found that overall quality of life, depression, and feelings of being overwhelmed by the demands of caregiving all improved in the group that started the program immediately compared with those who started later.

Dionne-Odom noted that there are few organized palliative care programs for caregivers of patients with advanced cancer, and reimbursement for this type of counseling is very limited. An online family care navigator tool from the Family Caregiver Alliance’s National Center on Caregiving website may help family givers find assistance in their local area.

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.

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.”

Stopping statins may benefit terminally ill patients

Results presented May 30 2014 at the 50th Annual Meeting of the American Society for Clinical Oncology (ASCO) and June 6 at the European Association of Palliative Care Research Conference show that stopping statins for cholesterol management in the late stages of cancer or other terminal illnesses may offer quality-of-life and even life-extending benefits. The results highlight the larger question of when, if ever, it is appropriate in patients with life-limiting illnesses to discontinue medications prescribed for other conditions that will likely not lead to their death.

Researchers from the University of Colorado Cancer Center and the Palliative Care Research Cooperative Group report that discontinuing statins in patients with advanced illnesses resulted in improved overall quality of life, lower costs and no increased deaths. In fact, the patients who stopped taking statins appeared to live slightly longer.

"Based on the study, for patients that are on medications for primary or secondary prevention – for example, those who have not just had a stroke or heart attack – and have a limited life expectancy of less than one year, I would recommend discussing with their physicians the potential to stop taking statins," says Jean Kutner, MD, MSPH, CU Cancer Center investigator and professor of medicine at the University of Colorado School of Medicine.

"We tend to be so focused on which medications are effective to start but there's no research on if and when to stop them. It's a new line of investigation. Especially in the context of end-of-life care, we believe there are many situations in which preventative drugs may be doing more harm than good," Kutner says.

Kutner points to medicines taken to prevent osteoporosis, blood clots, high blood pressure, and diabetes as candidates for future study. These are things people take to prevent something or treat a chronic illness. But particularly in the advanced cancer population, they may not be achieving the intended benefits," Kutner says.

The study enrolled 381 patients who faced the likelihood of dying within a year. All patients had been taking statins for at least three months; roughly half were randomized to continue taking the drug, the other half to discontinuing it.

The researchers followed the patients for up to a year to monitor survival, cardiovascular events and changes in quality of life.

Among the 192 study patients who continued statins, the median survival was 190 days; the 192 participants who stopped taking the drugs had a median survival of 229 days.

Those who discontinued the drugs reported a better overall quality of life, particularly in their psychological wellbeing, and saved money: $716 per person over the course of the trial for name-brand drugs, and $629 for generics.

Using U.S. population estimates, the researchers reported that as much as $603 million a year could be saved if patients in the late stages of fatal illnesses were to cut out statins.

"One thing we found during the study was clinicians saying, 'hey I never thought about stopping people's statins.' The study raised awareness. Here's a setting in which these drugs may not be doing most patients any good any more and bringing up the subject of stopping unneeded medications offers the opportunity for shared decision-making. There's power in individual choice," Kutner says.

How can modern medicine help dying patients achieve a 'good' death?

"Fear of dying is something almost every patient with advanced cancer or other life-threatening illness faces, and helping them, to achieve a "good death" is an important goal of palliative care," says Dr. Sarah Hales, Coordinator of Psychiatry Services, Psychosocial Oncology & Palliative Care, Princess Margaret Cancer Centre. "We know a lot about disease and the physical symptoms that it may produce, but only recently have we focused on approaches to relieve the fear of death in patients and families and to address the emotional, spiritual and existential concerns that support the quality of the dying experience."

Link to video of Dr. Sarah Hales: https://www.youtube.com/watch?v=ecYCvLF9M1w

Understanding the multiple dimensions of the dying process has helped us better care for patients and families at this stage of life, says Dr. Rodin, Head of the Department of Psychosocial Oncology and Palliative Care at the Princess Margaret Cancer Centre. "We have found that individuals evaluate differently the dimensions of the experience, which include symptom control, the sense of life closure and facing the end of life without overwhelming fear. The perspectives of patients on these issues at the end of life may differ from those of their family and health care providers."

The study, entitled "The Quality of Dying and Death in Cancer and Its Relationship to Palliative Care and Place of Death," is in press but on-line in the prestigious Journal of Pain and Symptom Management, with Dr. Sarah Hales, Lecturer, Department of Psychiatry, University of Toronto as lead author, as well as Drs. Camilla Zimmerman, Head of Palliative Care at the Princess Margaret, and Gary Rodin, Professor of Psychiatry at the University of Toronto and Academic Director of the Kensington Hospice.

Thirty-nine percent (39%) of the sample scored in the "good' to "almost perfect" range of a scale measuring the dying experience, with 61% of the sample scoring in the "neither good nor bad" range of the scale. Better scores were linked to older patients, high social support (most patients were not living alone), older caregiver age, English as the primary language of the caregiver, greater length of relationship between the caregiver and patient, less caregiver bereavement distress (i.e. grief, stress-response, and depressive symptoms) and home death.

The study examined 402 deaths of cancer patients between 2005 and 2010 in the three acute care hospitals of University Health Network and from the Tammy Latner Centre for Palliative Care, a home palliative care program at Mount Sinai Hospital in Toronto. Caregivers of the patients who spoke and read English were contacted and, those who agreed, were interviewed about the quality of death and dying using the Quality of Dying and Death (QODD) questionnaire, the most widely used and best validated tool to assess the dying experience.

The questionnaire includes 31 items covering symptoms and personal care, treatment preferences, time with family, whole person concerns, preparation for death, and the moment of death, with special attention to four key domains: Symptom Control, Preparation (i.e. visiting with spiritual advisor, avoiding life support, having funeral arrangements in order), Connectedness (i.e. spending time with family and friends), Transcendence (i.e. feeling unafraid of dying, feeling at peace with dying, feeling untroubled about strain on loved one). A total score on all variables was calculated from 0 to 100.

About one-third of all the cancer deaths occurred at home, while 40% occurred in an inpatient hospice/palliative care unit and 28% in an acute care hospital.

Receiving late or no palliative care was most common amongst those dying in a hospital, followed by those dying in a hospice/palliative care unit and least common amongst those dying at home. A late or no referral did not contribute to a worse overall quality of dying and death, but the authors state that this may mean that oncologists and family physicians provide good end-of- life care and that those who have more complicated illnesses are more likely to be referred to palliative care.

Home deaths were linked to better overall scores on the death experience, along with better Symptom Control and Preparation scores than dying in an acute-care or hospice setting. Surprisingly, home death with briefer palliative care was linked to better preparation and overall quality of dying than home death with longer palliative care involvement (i.e. greater than seven days).

In another surprise finding, there was no significant difference between a death in a hospice or palliative care setting and an acute care hospital. "You can have a good death in a hospice or a hospital setting when there is high quality palliative care," says Dr. Hales. "Caregivers often feel incredibly guilty about their loved ones dying in hospital, but it may not always be possible to die at home. Complicated symptoms, lack of advanced care planning and caregivers who feel overwhelmed with the process could indicate that a hospice or hospital death might be better for the patient and the family."

Although the dying and death experience ratings were generally positive, for a substantial minority, symptom control and death-related distress at the end of life were problematic. Fifteen per cent (15%) of the sample scored in the "terrible" to "poor" range for symptom control, with 19 percent scoring in the same range for Transcendence – feeling unafraid of or making peace with dying. These could be areas in which further interventions are needed to improve outcomes, say the authors.

Does palliative chemotherapy palliate?

Terminal cancer patients who receive chemotherapy in the last months of their lives are less likely to die where they want and are more likely to undergo invasive medical procedures than those who do not receive chemotherapy, according to research in this week's BMJ. The findings underscore a disconnect between the type of care many cancer patients say they want and the kind they receive, and highlight the need for clearer and more balanced discussion of the harms and benefits of palliative chemotherapy at the end of life by doctors, patients and families, the study authors say.

The Weill Cornell Medical College, Dana-Farber Cancer Institute and Harvard Medical School study found sobering outcomes for patients who received palliative chemotherapy -- treatment designed to prolong survival and ease symptoms, but not to cure disease -- among patients whom physicians had determined had six or fewer months to live. Whereas 80 percent of patients who did not receive palliative chemotherapy died where they wished, only 68 percent of those whose disease management included palliative chemotherapy died in the place they wanted to. Nearly 66 percent of patients who did not receive palliative chemotherapy died at home, compared to 47 percent of patients who received palliative chemotherapy. And patients who received palliative chemotherapy were much more likely than their counterparts to die in an intensive-care unit -- a contrast of 11 to 2 percent.

"It's hard to see in these data much of a silver lining to palliative chemotherapy for patients in the terminal stage of their cancer,"said senior author Dr. Holly Prigerson of Weill Cornell Medical College. "Until now, there hasn't been evidence of harmful effects of palliative chemotherapy in the last few months of life. This study is a first step in providing evidence that specifically demonstrates what negative outcomes may result. Additional studies are needed to confirm these troubling findings."

The reasons for the link are complex, but may originate in patients' misunderstanding of the purpose and likely consequences of palliative chemotherapy and lack of acknowledgment of their own prognoses, said Dr. Prigerson, who recently came to Weill Cornell from Dana-Farber Cancer Institute in Boston. In the study, patients getting palliative chemotherapy were less likely to talk to their oncologists about the care they wanted to receive if they were dying, to complete Do-Not-Resuscitate orders, or to acknowledge they were terminally ill, she noted. With 56 percent of patients receiving palliative chemotherapy in their final months, the findings underscore the potential harms of aggressive use of chemotherapy in dying patients, and the possible need for widespread changes in oncology practice at academic medical centers.

"Our finding that patients with terminal cancers were at higher risk of receiving intensive end-of-life care if they were treated with palliative chemotherapy months earlier underscores the importance of oncologists asking patients about their end-of-life wishes,"said Dr. Alexi Wright, an assistant professor and medical oncologist at Dana-Farber Cancer Institute and lead author on the study. "We often wait until patients stop chemotherapy before asking them about where and how they want to die, but this study shows we need to ask patients about their preferences while they are receiving chemotherapy to ensure they receive the kind of care they want near death."

The scientists analyzed data from 386 patients in the federally funded Coping with Cancer study, which followed terminally ill people and their caregivers until after the patients died. During the six-year study, researchers examined how psychosocial factors influenced patients' care. In the month after the patients died, caregivers were asked to rate their loved ones' care, quality of life, and place of death as being where the patient would have wanted to die. The investigators then reviewed patients' medical charts to determine the type of care they actually received in their last week.

Even after the researchers took into account characteristics such as age, marital status, whether a patient had health insurance, their overall physical and mental health, and the treatment they preferred, those who received palliative chemotherapy still underwent more invasive medical procedures in the last week of their lives and in more cases died in ICUs than patients who did not receive palliative chemotherapy. Among those interventions were CPR and mechanical ventilation.

Patients who received palliative chemotherapy were also more likely to be referred to hospice care, which provides comfort care and emotional support, a week or less before they died. Some 54 percent of patients receiving palliative chemotherapy were referred to hospice late, compared to about 37 percent of patients who weren't taking the drugs.

"The results highlight the need for more effective communication by doctors of terminal prognoses and the likely outcomes of chemotherapy for these patients,"said Dr. Prigerson, who was the principal investigator on the Coping with Cancer study. "For patients to make informed choices about their care, they need to know if they are incurable and understand what their life expectancy is, that palliative chemotherapy is not intended to cure them, that it may not appreciably prolong their life, and that it may result in the receipt of very aggressive, life-prolonging care at the expense of their quality of life."

The results should not be taken to mean that patients should be denied or not offered palliative chemotherapy, however. "The vast majority of patients in this study wanted palliative chemotherapy if it might increase their survival by as little as a week,"added Dr. Wright. "This study is a step towards understanding some of the human costs and benefits of palliative chemotherapy.

Physicians who prefer hospice care for themselves more likely to discuss it with patients

Despite preferences for their own care, many physicians still delay hospice discussions with patients

Although the vast majority of physicians participating in a multiregional study indicated that they would personally enroll in hospice care if they received a terminal cancer diagnosis, less than one-third would discuss hospice care early in the course of treating a terminally ill cancer patient. A research letter published online in JAMA Internal Medicine also identifies factors that increased the likelihood that physicians would choose hospice care for themselves and examines how their preferences relate to the timing of end-of-life care discussions with patients.

"Having timely discussions with terminally-ill cancer patients to establish goals for end-of-life care is important to maximize the quality of patient care. But by and large we're not doing a good job at having these discussions early on," says lead author Garrett Chinn, MD, MS, of the Massachusetts General Hospital Division of General Medicine. "We know that patients facing terminal illness often wish to spend their remaining days at home, surrounded by loved ones. Since end-of-life care in the U.S. often stands in stark contrast to these preferences, it's important to identify factors that may facilitate cost-effective care that supports patient preferences."

The current study was conducted as part of the Cancer Care Outcomes Research and Surveillance (CanCORS) study, a consortium of centers across the country measuring the quality of care delivered to 10,000 patients with newly diagnosed lung or colorectal cancer. This report reflects the answers of close to 4,400 physicians caring for cancer patients – including primary care physicians, surgeons, oncologists, radiation oncologists and other specialists – to two survey questions.

Respondents were asked to indicate how strongly they agreed with the statement, "If I were terminally ill with cancer, I would enroll in hospice." They also were asked when they would discuss hospice care with an asymptomatic patient with terminal cancer who they estimated had 4 to 6 months to live – right away, when symptoms first develop, when no more options are available to treat the cancer, when the patient is admitted to the hospital, or when the patient or family asks about hospice care.

In their response to the question about personal hospice enrollment, 65 percent reported strong agreement with the statement, and 21 percent indicated they agreed "somewhat." Physicians who were female, who cared for more terminally ill patients or who worked in managed care settings were more likely to indicate strong agreement, while surgeons and radiation oncologists were less likely than primary care physicians or oncologists to do so.

Only 27 percent of respondents overall indicated they would discuss hospice care with the described patient "now." Waiting until symptoms appear was the choice of 16 percent; 49 percent would bring it up when no more therapeutic options were available; and upon hospital admission or when asked by a patient or family member each were chosen by 4 percent. Among physicians who strongly agreed that they would personally enroll in hospice care, almost 30 percent responded that they would discuss hospice care with the patient 'now,' while about 20 percent of all other respondents would do so.

"Our results suggest that most doctors would want hospice care for themselves, but we know that many terminally ill cancer patients do not enroll in hospice," says Nancy Keating, MD, MPH, of the Harvard Department of Health Care policy, senior author of the report. "In the overall CANCORS study, only about half of the patients who died of metastatic lung cancer had ever discussed hospice care with their physician. Our findings suggest that doctors with more negative personal preferences about hospice care may delay these discussions with patients, which indicates they may benefit from learning more about how hospice can help their patients."

Chinn adds, "Although a physician's personal care preferences may be quite important, we still do a poor overall job having timely end-of-life care discussions with our terminally-ill cancer patients. A lack of knowledge about guidelines for end-of-life care for such patients, cultural and societal norms, or the continuity and quality of communication with patients and family members are also factors that might act as barriers preventing physicians from 'practicing what they preach' in end of life care."

Misunderstanding of Palliative Care Leads to Preventable Suffering

“Identity Problem” As Public, Patients, and Doctors Confuse Palliative Care with End of Life Care

A new review says palliative care’s association with end of life has created an “identity problem” that means the majority of patients facing a serious illness do not benefit from treatment of the physical and psychological symptoms that occur throughout their disease. The editorial is co-authored by palliative care experts at Harvard Medical School, Massachusetts General Hospital, the American Cancer Society, and Johns Hopkins University, and appears in the New England Journal of Medicine. The authors say palliative care should be initiated at the same time as standard medical care for patients with serious illnesses, and not brought up only after treatment has failed.

The authors say for palliative care to be used appropriately, clinicians, patients, and the general public must learn the fundamental differences between palliative care and hospice care, a distinction that is not well-known. Seven in ten Americans describe themselves as “not at all knowledgeable” about palliative care, and most health care professionals believe it is synonymous with end-of-life care. While both are intended to relieve suffering, hospice care provides care for people in the last phases of an incurable disease so that they may live as fully and comfortably as possible. Palliative care focuses on helping patients get relief from symptoms caused by serious illness and is appropriate at any age or stage in a serious illness. (For more information, see: "Palliative Care" on cancer.org.)

Adding to that is the fact that debates over “death panels,” physician-assisted suicide, and other factors have made policymakers reluctant to devote resources to initiatives perceived to be associated with death and dying. The authors point to lower levels of government funding for palliative care research compared to funding for other specialties.

“The practice and policy behind palliative care must be considered independently from end-of-life care,” write the authors. “Palliative care should no longer be reserved exclusively for those who have exhausted options for life-prolonging therapies.”

The editorial presents clinical, economic, and political cases to show the value of earlier palliative care, and use them to propose initial priorities for clinicians and policymakers to integrate early palliative care into practice. The authors say implementing earlier palliative care would not only improve quality of life, but would also reduce spending and help patients with advanced cancer clarify their treatment preferences. And evidence shows patients who are given palliative care early on even have better outcomes.

Article: Early Specialty Palliative Care — Translating Data in Oncology into Practice; N Engl J Med 2013;369:2347-51, doi: 10.1056/NEJMsb1205469