Hospice Trends: Intensive care is next frontier for hospices
With this issue, Hospice Management Advisor begins a new column on hospice trends that will be written by Larry Beresford, a health care journalist who specializes in hospice issues. He is the author of The Hospice Handbook: A Complete Guide (Boston: Little, Brown & Co., 1993).
Hospice Trends: Intensive care is next frontier for hospices
More than 500,000 people die each year in ICUs
By Larry Beresford
For many hospice professionals, dying in an intensive care unit (ICU) may seem like the antithesis of the gentle, peaceful death experience they try to facilitate every day for terminally ill patients and their families. Other than a vague sense that intensive care for dying patients might be futile and even wasteful -- or that those patients should have been referred to hospice care instead -- hospice professionals may not pay much attention to what goes on in the ICU, even within their own health systems.
But if they did, they might learn some telling facts about death in the ICU and discover an emerging trend aimed at improving end-of-life care in the critical care setting. The bigger question is how might hospices contribute their end-of-life expertise not under the traditional mechanism of the Medicare Hospice Benefit, but indirectly and collaboratively, such as through involvement in a palliative care consultation service. If hospices can’t find ways to collaborate and contribute to the process of improving end-of-life care in the ICU, the hospital will surely move forward anyway, without their participation.
An estimated 540,000 Americans die each year following an ICU admission, out of 5 million total ICU admissions. Some of those patients die in the ICU, and others after discharge to a less intensive care setting. That number of deaths equals all deaths from cancer in this country and nearly equals the number of deaths in hospice care.
The SUPPORT study, the Dartmouth Atlas of Health, and other research point to regional variations in the rate of ICU care in the last six months of life — as well as disparities in rates of withholding or withdrawing life-sustaining treatments.
However, the majority of ICU deaths now follow a withholding or withdrawing decision. Although most ICU patients are not able to communicate their care preferences at the time such decisions are made, the numbers clearly show that end-of-life conversations are going on between ICU professionals and those patients’ families. Research on advance directives has raised serious questions about the efficacy of such documents in shaping end-of-life treatment decisions in the ICU. But despite the widely held view that dying patients shouldn’t be in the ICU in the first place, only a small proportion of patients who die there could have been identified as likely to die at the time of their ICU admission.
A growing arena for palliative care
Many dying patients end up in the ICU after an unexpected event such as an accident or flare-up of a serious, chronic illness. Others are admitted with reasonable hopes that life-sustaining intensive care might allow them to recover, or at least enjoy extended life, but those hopes have been dashed.
Some dying ICU patients will get referred to other, less intensive care settings, including inpatient or home-based hospices. Others are so ill or dependent on ICU technology that transfer is not possible. Conflict with loved ones surrounding end-of-life decision-making is common. But while the typical conflict in past years was between families not wanting to prolong their loved one’s suffering and physicians wanting to continue life-sustaining treatments in hope of eventual recovery, more often today their positions have reversed.
Obviously, the ICU is a major arena for palliative or end-of-life care and a huge target for those seeking to improve care at the end of life. ICU professionals themselves increasingly recognize that attention to end-of-life issues is part of their jobs, and many are striving to develop the skills, tools, and services needed to address those issues. Examples of recent changes in ICUs include more open visiting hours, supportive services for families, regular family meetings, and attention to the physical environment. Other evidence of the growing interest in improving end-of-life care in the ICU includes the following:
• A report published in September by the National Coalition on Health Care and the Institute for Healthcare Improvement (for which I was the primary researcher and author), titled Care in the ICU: Teaming Up to Improve Quality, profiled 11 hospital critical care units or departments engaged in outstanding quality improvement initiatives. In two instances, improving the quality of end-of-life care and developing tools for assessing and documenting that quality were key aspects of why they were chosen for inclusion in the report. (For more information, go to www.nchc.org.)
• Promoting Excellence in End-of-Life Care, a Robert Wood Johnson Foundation program office that supports innovative end-of-life projects, in 1998 convened an end-of-life Critical Care Peer Workgroup to explore this emerging field and develop quality tools and resources. (See www.promotingexcellence.org.)
• One concrete result of the workgroup’s efforts is a medical textbook published in 2001 by Oxford University Press and edited by J. Randall Curtis, MD, and Gordon Rubenfeld, MD, of the University of Washington. Managing Death in the ICU: The Transition from Cure to Comfort explores in detail the evolving landscape of death in the ICU, decisions to limit life support, and essential technical skills.
• Other groups looking at quality and standards for end-of-life care in the ICU include the American Thoracic Society’s Task Force on End-of-Life Care, the Society of Critical Care Medicine’s Ethics Committee, which recently proposed recommendations for end-of-life care, and a special end-of-life issue of the professional journal Critical Care Medicine.
• Last summer, Promoting Excellence announced a new $2.2 million initiative called "Promoting Palliative Care Excellence in Intensive Care." Over 240 letters of intent were received from collaborative hospital palliative/ critical care projects. Awards of three-year, $375,000 grants will be announced in early March.
The Promoting Excellence initiative explicitly endorses the concept of reinventing the ICU to provide whole-person care, including attention to quality of life and emotional and spiritual aspects of disease, support for families, and the provision of palliative care simultaneous with life-sustaining treatment. This approach asserts that palliative care should be provided to all patients in the ICU, not just those thought to be dying. That is because:
- all ICU patients are sick enough to be considered close to death, even though they may recover;
- many have unrelieved pain and other symptoms that palliative care could ameliorate;
- the whole experience is likely to be highly stressful for patients and for their loved ones.
How can hospices get involved?
A number of the initial letters of intent for the ICU initiative involved a hospice program as a partner, says Promoting Excellence deputy director Jeanne Twohig. More common proposals were either to intensively train all members of the ICU’s staff in palliative care or to provide less intensive training to the ICU team while working closely with an existing palliative care consultation service in the hospital.
"Obviously, there’s enormous interest in this subject across the country, and a real hunger for information," Twohig says. As ICUs look to their parent hospitals for palliative care expertise, if the hospital doesn’t already have a palliative care program, it could provide an opening for a community hospice to help establish one.
"With hospice being the gold standard of palliative care, hospices have a lot to contribute to the ICU," Twohig says. The concept of hospital-hospice collaboration in palliative care development has been a major theme for the Center to Advance Palliative Care, and partnering to bring palliative care into the ICU is a natural extension of that concept, she adds. "Hospices know how to create a more supportive physical environment, and they have the spiritual component. I would also expect that there would be an increase in referrals to hospices from ICUs that develop palliative care."
But how can hospices get involved? The first step is just to make contact and initiate a dialogue, perhaps scheduling a meeting with ICU medical and nursing directors to discuss mutual interests such as quality improvement and referral protocols. It may be that such conversations would point to the need for a hospice inpatient unit within the hospital, which could directly enroll hospitalized patients onto the Medicare Hospice Benefit and serve as an outlet for timely discharges from the ICU.
However, it will be important to remember that not all dying patients can or should be discharged from the ICU. An approach focused only on expediting referrals to hospice care will not address the ICU’s needs and may not be appreciated. Instead, collaboration requires an open mind and a willingness to consider new solutions to old problems. Hospices should be open to learning from ICU staff about the contemporary realities of intensive care, the "miracles" that are achieved there every day, and the challenges faced by ICU professionals.
Based on such mutual explorations, the hospice might offer training in palliative care concepts and techniques, the services of its volunteer and spiritual components, liaison nurses, representation at ICU rounds, family support services and groups, and bereavement follow-up. The terminal withdrawal of ventilator support has both technical and emotional aspects and thus is an obvious point of collaboration.
The hospice program will not be able to directly manage care in the ICU, which requires a new mindset from the hospice team. An inpatient, interdisciplinary palliative care consultation service, available for time-limited interventions on referral to address the palliative needs of hospitalized patients, is a logical place to start. Many hospices are now partnering with hospitals in establishing such services.
One prominent hospice that has successfully partnered with ICUs in its community is Hospice of the Bluegrass in Lexington, KY, working through the hospice’s medical director, Terry Gutgsell, MD, and its affiliated palliative care consultation service, which collaborates with the city’s three hospitals. At one of the partnering hospitals, St. Joseph’s Hospital, the hospice operates an inpatient unit that offers an outlet for discharging dying patients from the ICU.
At another, Central Baptist Hospital, Gutgsell’s team is now called in to consult on half of the patients dying on two ICUs to address pain and suffering, help explain the patient’s prognosis to the family, and explore goals of care and difficult treatment decisions.
"Such conversations are the heart and soul of what we do as palliative care consultants," Gutgsell says. When it becomes clear that the patient’s care may be becoming futile, ICU staff thinks to call Gutgsell’s team. But the culture of ICUs is changing to recognize the need for the consulting team’s expertise in family support and communication, even when the patient is not necessarily dying.
"Death in the ICU can be just as good or bad as it is on our hospice unit," he says. "If a meaningful ritual is held, if the patient is comfortable, if the family feels that it has been heard, if we can get the instruments and monitors out of the way, then death in the ICU can be a good experience. I will talk to these families about our hospice unit, but the vast majority of patients die in the ICU and that’s really OK. So the question is: How can we best impact that experience?"
[Editor’s note: Larry Beresford can be reached at 5253 Trask St., Oakland, CA 94601. Telephone: (510) 536-3048. E-mail: [email protected].]
For many hospice professionals, dying in an intensive care unit (ICU) may seem like the antithesis of the gentle, peaceful death experience they try to facilitate every day for terminally ill patients and their families. Other than a vague sense that intensive care for dying patients might be futile and even wasteful -- or that those patients should have been referred to hospice care instead -- hospice professionals may not pay much attention to what goes on in the ICU, even within their own health systems.
Subscribe Now for Access
You have reached your article limit for the month. We hope you found our articles both enjoyable and insightful. For information on new subscriptions, product trials, alternative billing arrangements or group and site discounts please call 800-688-2421. We look forward to having you as a long-term member of the Relias Media community.