Feb 022015

by Adam Singer

Symptoms such as pain and confusion are very distressing for those nearing the end of life and their families. That’s why increasing attention to end-of-life care is spurring greater interest in alleviating such symptoms as a critical component of quality of life. Yet there is still a long way to go: a just-published in the Annals of Internal Medicine (https://www.acpjournals.org/doi/10.7326/M13-1609) finds there has been no improvement in the prevalence of common symptoms among end-of-life patients. In fact, many important symptoms — including pain and depression — have actually become more common.

In 1997, the Institute of Medicine (IOM) released a seminal report on the state of end-of-life care in the US that called for major changes in the organization and delivery of end-of-life care.[1] Many of the IOM’s indictments have ostensibly been addressed since that time through the expansion of palliative care and hospice, along with a greater focus on symptom management in both policy and practice. The Annals study was designed to ask whether end-of-life symptoms have become less prevalent from 1998 to 2010.

The study used data from the Health and Retirement Study (HRS), a nationally representative longitudinal survey of community-dwelling adults aged 51 or older (http://hrsonline.isr.umich.edu/). Using an interview design, HRS collects information after each participant’s death from a proxy informant (usually a family member) about that individual’s end-of-life experience, including whether the person had any of the following eight symptoms for at least a month during the last year of life: pain, depression, periodic confusion, dyspnea, severe fatigue, incontinence, anorexia, and frequent vomiting. Using that information and the date of each participant’s death, the study analyzed the prevalence of each symptom over time for the population as a whole and also for subgroups that died suddenly or had cancer, congestive heart failure (CHF), chronic lung disease, or frailty.

The study found that many alarming symptoms were common in the last year of life and affected more people from 1998 to 2010. For example, in the whole population, pain affected 54% in 1998 and 61% in 2010 (a 12% increase). Depression affected 45% in 1998 and 57% in 2010 (a 27% increase). Periodic confusion affected 41% in 1998 and 54% in 2010 (a 31% increase). Depression and periodic confusion also became more prevalent in subgroups with CHF and/or chronic lung disease and frailty. These results are summarized in Table 1 below.

Prevalence of Key Symptoms in the Last Year of Life in 1998 and 2010

Prevalence of Key Symptoms in the Last Year of Life in 1998 and 2010

In addition to the key results highlighted in Table 1, nearly all other symptoms in the whole population and in each of the subgroups trended toward increases in prevalence from 1998 to 2010, although most of these trends did not reach statistical significance. The one exception is that there were no significant changes in the subgroup with cancer.

High and worsening symptom prevalence near the end of life raises serious concerns about stubbornly ingrained shortcomings in end-of-life care despite the increasing national attention and resources being devoted to it. Indeed, recent studies of health care performance suggest that many providers continue to fall short in symptom management near the end of life.[2],[3],[4] The fact that pain remains common is particularly troubling, as this symptom is highly visible, well-studied, relatively reliably ameliorated, and has a large impact on health-related quality of life.[5] On the other hand, it is encouraging that trends in symptom prevalence in cancer may have stabilized.

While there have been many positive developments in end-of-life care since 1997, the Annals study shows that much more effort is needed to ensure that policy and organizational change translate to improvements in actual patient outcomes. Along these lines, there are many reasons why end-of-life symptom prevalence may not have improved since the IOM report:

  • Intensity of treatment has been increasing near the end of life, and even though hospice use doubled from 2000 to 2009, the median stay is under three weeks.[6],[7] “Tacking on” hospice to otherwise intense late life care may leave patients suffering in the meantime and simply may not provide enough time for hospice to help alleviate symptoms.
  • Palliative care services are more common in hospitals (where palliative care programs have tripled since 2000),[8] but most of the course of a terminal illness takes place outside of the hospital. Many patients may not have consistent access to palliative services known to be effective in promoting symptomatic relief.
  • Effective treatments exist for many end-of-life symptoms, but there are significant gaps in their delivery.[9],[10] Interventions may not be reaching the right patients in the right ways.

In summary, the prevalence of many end-of-life symptoms remains unacceptably and disappointingly high in light of active efforts to improve end-of-life care. Some best practices simply are not being followed. Some choices are not being adequately explained and offered to patients and the family caregivers supporting them. Aligning current care with best practices represents a promising way to harvest low-hanging fruit in order to reverse these negative trends and reduce end-of-life symptom burden for millions of Americans. But beyond that, the trends characterized in the Annals study must be parsed further in order to identify better and more coordinated ways to organize and deliver high-quality end-of-life symptom management.



[1] Approaching death: Improving care at the end of life. Washington, D.C.: Institute of Medicine; 1997.

[2] Walling, A.M., Asch, S.M., Lorenz, K.A., et al. The quality of care provided to hospitalized patients at the end of life. Arch Intern Med. 2010;170(12):1057-1063.

[3] Dy, S.M., Asch, S.M., Lorenz, K.A., et al. Quality of end-of-life care for patients with advanced cancer in an academic medical center. J Palliat Med. 2011;14(4):451-457.

[4] Malin, J.L., O’Neill, S.M., Asch, S.M., et al. Quality of supportive care for patients with advanced cancer in a VA medical center. J Palliat Med. 2011;14(5):573-577.

[5] Relieving pain in America: A blueprint for transforming prevention, care, education, and research. Washington, D.C.: Institute of Medicine;2011.

[6] Teno, J.M., Gozalo, P.L., Bynum, J.P., et al. Change in end-of-life care for Medicare beneficiaries: site of death, place of care, and health care transitions in 2000, 2005, and 2009.JAMA. 2013;309(5):470-477.

[7] NHPCO facts and figures: Hospice care in America. Alexandria, VA: National Hospice and Palliative Care Organization;2014.

[8] Growth of palliative care in U.S. hospitals: 2014 snapshot. New York, NY: Center to Advance Palliative Care;2014.

[9] Walling, A.M., Asch, S.M., Lorenz, K.A., et al. The quality of supportive care among inpatients dying with advanced cancer. Support Care Cancer. 2012;20(9):2189-2194.

[10] Walling, A.M., Tisnado, D., Asch, S.M., et al. The quality of supportive cancer care in the veterans affairs health system and targets for improvement. JAMA Intern Med. 2013;173(22):2071-2079.

Jun 192012

Since 1995,  Ohio-based Summa Health System and its partners have led a collaborative, the SAGE Project (Summa Health System/Area Agency on Aging, 10B/Geriatric Evaluation Project), which has worked to improve care for the state’s most vulnerable elders by integrating the aging network, and its social services, with health and medical care. The project aims to integrate a comprehensive hospital-based clinical program with the community aging network to improve the health and functional status of older adults, and prevent institutionalization for those at risk for nursing home placement.

More recently, members from the SAGE project have been working on the PEACE Trial (Promoting Effective Advanced Care for Elders), an initiative funded by the National Palliative Care Research Center and the Summa Foundation. In addition to Summa and the AAA, the project involves the University of Akron, Kent State University, and the Northeastern Ohio Universities Colleges of Medicine and Pharmacy. The randomized controlled pilot study features a geri-palliative care case management intervention for Ohio consumers who are participants in the state’s long-term care Medicaid waiver program, PASSPORT. The intervention involves collaborative care between a hospital-based interdisciplinary care team, the AAA, and the consumer’s own primary care provider.

Like other older adults throughout the nation, Ohio’s community-dwelling patients who had poor symptom control and coordination of care often experienced exacerbations that led to hospitalizations. Frequently, these elders  have not documented their advance care preferences, and so arrive in the hospital, where family members are left to make critical decisions for which they are unprepared.

The PEACE Trial seeks to change this dynamic by focusing on health coaching and patient activation for self management,  while promoting advance care planning discussions with primary care providers. The target population includes new PASSPORT enrollees over the age of 60 who are living with one of 9 life-limiting conditions. Nurse assesssors—care managers—from the AAA screen patients at the time of their initial PASSPORT assessment; patients are then randomized to the control or intervention group.

AAA nurse or social worker care managers engage with consumers in a variety of activities. Care managers make two home visits, for example, centered on symptom assessment and advance care planning. They review findings with an interdisciplinary team, which makes appropriate recommendations for the patient and the primary care provider. The care manager next accompanies the consumer to one visit with the primary care provider to discuss advance care goals. Following this, the care manager and the palliative care nurse supervisor make an additional home visit to begin to implement the care plan. The consumer then receives up to one year of monthly follow-up visits from the care manager.

Researchers are tracking outcomes, measured at 3-, 6-, 9- and 12- month intervals. Outcomes include symptom management, quality of life/death, relationships, patient activiation and decision making, and depression and anxiety.

An initial challenge was in getting buy-in from care managers, and in changing the culture of the AAA. However, all care managers eventually expressed their appreciation of the value of the project for improving consumer outcomes. The project is working to get more “top-down” support from the AAA so that participating care managers receive the support they need to work with consumers, including education and skills to engage them.   The researchers and case managers also realized they needed more formal curriculum to teach effective methods and skills for advanced care planning discussions and goal settings. A second project was developed to create an online learning curriculum through the support of the First Merit Foundation and led by the University of Akron College of Nursing.  A key challenge has been to avoid “medicalizing” the care plans, making sure that they attend to human/emotional factors as well as health and medical status.

The program’s strength lies in the strong working relationship among all the partners, particularly in the commitment of the AAA to improve care for frail elders. Partners report that they are “becoming bilingual”, that culture sensitivity and knowledge sharing between the aging network and acute care providers has grown.

For more information, see Results of the promoting effective advance care planning for elders (PEACE) randomized pilot study (2014) by Dr. Skip Radwany et al.

Key words: PEACE trial, palliative care, geriatrics, AAA, collaboration

Nov 282011

Hospice and palliative care can play a major role in improving care transitions for patients who have serious chronic conditions. Dr. Joanne Lynn explains how the hospice/palliative care model can improve patient care, offering 24/7 support, excellent symptom management, and wraparound services. People will need to realize what they’re up against, and turn to these important resources.

Key Words: care transitions, palliative care, hospice quality improvement

Oct 272011

 by Larry Beresford

The Hospital Association of Southern California, which convened a Palliative Care Committee to provide mutual support among its members working on palliative care initiatives, recently changed the committee’s name to the Care Transitions Committee, reflecting the affinities between these two major quality currents within America’s hospitals. But as the cover story in the most recent Quarterly newsletter of the American Association of Hospice and Palliative Medicine asks: “Where is Palliative Care in the Readmissions Boom?”

A growing body of research has documented palliative care’s ability to help seriously ill, hospitalized patients clarify their goals for treatment, manage their symptoms, and plan for the next stages of their care in alignment with their values, often at lower cost of hospital resources and higher patient satisfaction. Palliative care teams in the hospital often see the patients with the most serious illnesses, psycho-social complications and multiple chronic conditions, who are also at higher risk for readmission. Palliative care, in contrast to hospice, does not require a terminal diagnosis or time-limited prognosis. It can be offered from the point of diagnosis of a serious, chronic or incurable condition, in conjunction with any other treatment modality. Palliative care focuses on quality of life, relief of pain and suffering, and support for emotional and family concerns.

But palliative care is also serious and complex specialty care, with board certification offered in Hospice and Palliative Medicine, accredited medical fellowship opportunities, and advanced certification for hospital palliative care programs offered since September by the Joint Commission. A growing body of quality measures used in palliative care has been recognized by the National Quality Forum. Although it has been slower to develop outside the hospital’s four walls, the number of hospital-based palliative care services has steadily grown to 1,568, 63 percent of all hospitals with 50 or more beds. The same way that hospitals and hospital medicine groups are coming to recognize their responsibility for the outcomes of their discharge plans after the patient leaves the hospital, palliative care teams are now exploring their role post-discharge.

So why isn’t palliative care, with its specialty recognition and demonstrated positive outcomes, more front-and-center in current national efforts to improve care transitions across the health care system, thereby contributing to preventing unnecessary rehospitalizations? Some places, like the Hospital Association of Southern California, have acknowledged the connection. Others have given palliative care representatives a seat at the table when cross-setting teams meet to work on improving care transitions in their communities.

But Dr. Diane Meier, director of the Center to Advance Palliative Care, tells AAHPM’s Quarterly that the biggest barrier is the absence of research demonstrating the impact of palliative care consultations in the hospital on 30-day readmission rates — in contrast to data that convincingly demonstrates palliative care’s value equation within the hospital. “I think that is an urgent, high-priority research question for our field,” Dr. Meier says. “I am concerned that we are going to miss this window of opportunity, even though our patients are a big part of the readmission problem.” (For more information on palliative care, see the Center to Advance Palliative Care.)

 Key words: palliative care, care transitions, discharge planning, readmissions

Sep 282011

A three-part protocol, involving standardized assessment, palliative care consultations, and root cause analysis led to a 20% reduction in hospital readmissions for elderly skilled nursing facility residents, according to the AHRQ Health Care Innovations Exchange.

Led by Dr. Randi Berkowitz, a Practice Change Fellow, the initiative focused on reducing the risk of hospital readmissions at Hebrew SeniorLife,  an integrated eight-site system of health care, housing, research, and teaching based in Boston. The Practice Change Fellows Program [now the Practice Change Leaders for Aging and Health Program] is a two-year award that enables clinicians to work on projects to improve care of older adults, supporting them as they develop leadership skills and content expertise.

According to AHRQ, Berkowitz developed a program that featured: standardized assessment at admission to identify patients with multiple prior hospitalizations, palliative care consults and care plans for those who had had three or more hospitalizations in the previous six months, and a multidisciplinary staff conference to examine the root causes of inpatient readmissions when they occurred. As a result, inpatient readmissions decreased by 20%, from 16.5% before implementation to 13.3% after it.

Developing the project required that Berkowitz obtain approval from Hebrew SeniorLife leaders, form and advisory committee, develop the standardized admissions template, and introduce program and multidisciplinary conferences.  Learn more about the work at


Key Words: readmissions, palliative care consults, skilled nursing facility, care transitions

May 172011

The national commitment to improving care transitions is a remarkable opportunity for geriatrics and palliative care to make a mark (and even to get paid for doing it right!).  HHS has set a goal of reducing readmissions nationwide by 20% within three years .  The Affordable Care Act (Section 3026) put in place a $500million initiative for Community-Based Care Transitions https://innovation.cms.gov/initiatives/CCTP/, providing funding for community-based organizations to take the lead in assuring smooth transitions among settings in health care.  The Partnership for Patients adds substantial funding and organization to that initiative, and the upcoming QIO contracts provide some help to communities trying to get work underway https://www.fbo.gov/index?s=opportunity&mode=form&id=c9758e6861085718832064025f15d75f&tab=core&_cview=1 .  Hospitals are up against serious penalties for high rehospitalization rates in three years, under Section 3025 of the ACA.

What is especially important for geriatrics and palliative care is that most of what one needs to do to move patients safely from one setting to another is also at the core of our competencies – having a good care plan, making sure the medications are right, motivating patients and families to take an active role in treatment, coordinating social and medical services, providing supportive care, enabling patients to live at home through death, standardizing procedures across multiple providers, and getting information to the right place at the right time.  So – we can work toward care plans that reflect the medical and social situation and continue across time and settings, without having to take on the distortions of those who focus only on living wills.  We can work on community-based supportive services without apology to those who focus upon aggressive interventions.  There is even a strong role for supporting family caregivers.

Hospitals and health plans are taking the incentives and penalties seriously, creating an opening for good comprehensive care for our sickest and most disabled patients.  Often, we know the community-based organizations that could take the lead in seeking funding for the Community-Based Care Transitions program.  We can also take a strong hand in shaping these initiatives.  Right now, the quality measures for the Accountable Care Organizations are up for comment. The measures proposed start on about p.19569 at  https://www.govinfo.gov/content/pkg/FR-2011-04-07/pdf/2011-7880.pdf .  You will note that there is no specific measure of the quality of the care plan or its continuity across settings (and you might comment to ask that this be developed and added asap!). You might also note that measure #9 is quite misleading and should not be used (having a physician visit before readmission or within 30 days of hospital discharge).  Another clear target is the oppressive antitrust rule, which mostly bars progression to ACO for most geographically-based organization of services.  This is much more complicated, but probably deserves at least a push-back on behalf of our patients (for whom the distribution of the “market” for surgeries and other interventional treatments is not determinative of good policy.  The instructions on how to submit a comment is on the first page of the proposed regulations https://www.govinfo.gov/content/pkg/FR-2011-04-07/pdf/2011-7880.pdf .

So – what should you do – First, spread the word that Care Transitions is quite an opportunity for real growth in the quality and reliability of care that we can provide.  Second, check on whether your community might propose a Community Based Care Transitions program.  You can find lots of information at https://innovation.cms.gov/initiatives/CCTP/ and www.medicaring.org Third, write comments on the ACO regulations and watch for other opportunities.  Fourth, sign up for Twitter, and follow @medicaring – we’ll aim to keep you informed painlessly.  Fifth, get to know your federal and state representatives – have them come visit your place, or meet with them when they have office hours in the home district.  They will listen to you so much better if they have met you before and heard what you are trying to do.  Finally, help the American Geriatrics Society and others mount ever-stronger voices to shape the care of the elderly and those facing long-term serious illnesses – and back their engagement with letters, calls, and comments.

Keywords: geriatrics, palliative care, care transitions