Use of intensive medical services for ovarian cancer patients at end of life increases despite rise in use of hospice

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There have been widespread efforts to improve the quality of life of terminally ill patients. As more patients choose to spend their final days and weeks in hospice care rather than a hospital, the hope is the use of intensive and costly hospital services would decline. A new study by Dana-Farber Cancer Institute researchers shows for one group of terminally ill cancer patients, that is not what is happening.

The study, which tracked nearly 7,000 older patients with ovarian cancer, found that between 1997 and 2007, patients were more likely to enter a hospice and less likely to die in a hospital. However their use of hospital-based services actually increased. These seemingly paradoxical findings, published in the October issue of the Journal of Clinical Oncology, suggest that many patients received aggressive treatments while in the hospital, and resorted to hospice care as an "add-on" when those treatments fail, the authors write.

"There's a growing awareness that the use of aggressive, expensive medical interventions at the end of life often doesn't improve patients' quality of life and may even make it worse," said Alexi Wright, MD, MPH, the lead author of the study and medical oncologist at Dana-Farber. "Hospice care, which focuses on intensive symptom management at home, is an attractive option for many people. But unless people make an end-of-life care plan while they're healthy -- spelling out their preferences in advance -- these important decisions are often made for them, or occur in a crisis atmosphere. That may explain why, in this study, we saw an increased use of hospital-based services even as hospice enrollment increased."

The study analyzed the Medicare records of 6,956 women aged 66 or older who were diagnosed with ovarian cancer between 1997 and 2007, and who died of the disease by the end of 2007. The researchers found that hospice use increased significantly during that period, while hospitalized deaths fell. But they also found significant increases in intensive care unit admissions, hospitalizations, repeated emergency department visits, and transitions from one health care facility to another.

During the same time frame, the proportion of patients who were referred to hospice from a hospital inpatient clinic rose. And 70 percent of patients were transferred between medical facilities at least once in the last month of life -- with 20 percent experiencing major transitions between care settings within the final three days of life.

The findings paint a hectic picture of elderly, terminally ill patients undergoing multiple, stressful medical interventions, undergoing transfers between facilities, all before arriving at a hospice, where their stay may be very brief.

"The earlier people can make plans -- with their families and physicians -- the better they can control the kind of care they receive at the end of life," Wright remarked. "Many people want their final days to be a time of legacy building -- a time when they can share or build memories with their loved ones -- instead of time spent in hospitals or receiving potentially futile medical interventions. Our study points to the extent to which such planning is still needed."

Patients Most Likely to Delay Hospice Enrollment Until Final Days of Life

One in six cancer patients enroll in hospice only during their last three days of life, according to a new study from a team from the Perelman School of Medicine at the University of Pennsylvania. Their findings, published online last month in the Journal of Clinical Oncology (JCO)  also reveal a profile of patients who may be most at risk of these late admissions.

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“Waiting until the final days of life to begin hospice can shortchange patients and their families – skipping over many benefits of hospice care and limiting the opportunity to improve patients’ quality of life during this stressful time,” said study co-author David Casarett, MD, a professor of Medicine and director of Hospice and Palliative care at Penn Medicine. 

“Our findings point to some reasons why patients may seek hospice care so late in the course of their illness, which we hope will enable us to improve transitions to hospice at a more beneficial point in their care.”

The team examined de-identified data from electronic medical records of 64,264 patients in 12 hospices in the Coalition of Hospices Organized to Investigate Comparative Effectiveness network from January 2008 to May 2013. Hospices spanned 11 states, including Pennsylvania, with censuses ranging from 400 to 1,700 patients per day.  Of those 64,264 patients, 10,460 had a hospice stay of 3 days or fewer.

The study found several characteristics associated with hospice length of stay of three days or less, including being male, married, younger than 65, and of nonwhite ethnicity. Also, patients with blood cancers and liver cancer were more often than those of oral cancer to be among those admitted within the last three days of life.

Findings indicated that Medicaid and uninsured patients who enrolled in hospice typically did so earlier in the course of their illness than those with commercial insurance or Medicare. The researchers suggest these patterns illustrate which patients may be less able to afford out-of-pocket expenses associated with prolonged aggressive or experimental treatment, or that they may receive care in oncology practices that differ in their aggressiveness of care.

Previous studies found that patients with blood cancers enter hospice less often, overall, than other cancer patients, but this study also examined timing of entry and found those with blood cancers entered hospice later than other cancer patients. The authors theorize this may be due to a dependence on blood products, as hospice typically does not cover blood transfusions, or pursuit of bone marrow or stem cell transplants late in the disease course, which can delay hospice. Also, those with blood cancers – especially patients who’ve undergone bone marrow transplants and are susceptible to life-threatening infections -- may have a more abrupt decline towards end of life than those with other cancers. 

The researchers say the marriage association may be because marriage can provide caregiving structure – such as help with transportation to medical appointments and assistance with medication -- and emotional support and motivation to support continued treatment. And, they note, some married patients may prolong treatment for their spouse’s sake.

This study comes amid the National Quality Forum and the American Society for Clinical Oncology’s joint endorsement of quality measures for end of life care in cancer patients. Eventually, oncology practices and health systems may be measured and reimbursed in part on their percentage of patients who enroll near the end of life and be linked to pay-for-performance initiatives.

With further study, the Penn researchers suggest that these findings could aid in identifying at-risk patient populations for targeted interventions promoting earlier hospice discussions.

“It is essential to optimize transitions to hospice and make it easier for patients and their loved ones to access this care,” said the study’s lead author, Nina R. O'Connor, MD, assistant professor of clinical medicine. “Better integration of palliative care into cancer treatment – even that which is provided with curative intent – is one strategy that may be helpful. By helping patients to access care that improves their quality of life along the spectrum of their illness, we are able to create a more natural pathway to hospice care when and if that option becomes appropriate.”

Antibiotic use prevalent in hospice patients despite limited evidence of its value

New research suggests that use of antibiotics is still prevalent among terminal patients who have chosen hospice care as an end-of-life option, despite little evidence that the medications improve symptoms or quality of life, and sometimes may cause unwanted side effects.

The use of antibiotics is so engrained in contemporary medicine that 21 percent of patients being discharged from hospitals directly to a hospice program leave with a prescription for antibiotics, even though more than one fourth of them don’t have a documented infection during their hospital admission.

About 27 percent of hospice patients are still taking antibiotics in the final week of their life.

This raises serious questions about whether such broad and continued antibiotic use is appropriate in so many hospice cases, experts say, where the underlying concept is to control pain and protect the remaining quality of life without aggressively continuing medical treatment.

Additional concerns with antibiotic use, the study concluded, include medication side effects and adverse events, increased risk of subsequent opportunistic infections, prolonging the dying process and increasing the risk of developing antibiotic resistant microorganisms.

The findings were just published in Antimicrobial Agents and Chemotherapy by researchers from Oregon State University and the Oregon Health & Science University. It was supported by the National Institutes of Health.

“Hospice care is very patient centered and in terminal patients it focuses on palliative care and symptom relief, not curative therapy,” said Jon Furuno, an associate professor in the Oregon State University/Oregon Health & Science University College of Pharmacy.

“It’s not for everyone, and it’s a serious decision people usually make in consultation with their family, nurses and doctors. These are tough conversations to have.

“Having decided to use hospice, however, the frequency and prevalence of antibiotic use in this patient population is a concern,” Furuno said. “Antibiotics themselves can have serious side effects that sometimes cause new problems, a factor that often isn’t adequately considered. And in terminally-ill people they may or may not work anyway.”

Issues such as this, Furuno said, continue to crop up in the evolving issue of hospice care, which is still growing in popularity as many people choose to naturally allow their life to end with limited medical treatment and often in their own homes. Hospice is covered by Medicare for people with a life expectancy of less than six months, helps to control medical costs and reduce hospital stays, and its services are now used by more than one third of dying Americans.

Unnecessary and inappropriate antibiotic use is already a concern across all segments of society, researchers said in the report, and more efforts are clearly needed to address the issue in hospice patients. The design of the study probably leads to it underestimating the significance of the problem, the researchers wrote in their conclusion.

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.