Improving Care for the End of Life, Online Edition The Palliative Care Policy Center

Sourcebook : Improving Care for the End of Life : 7.0 Continuity of Care

A hospital is no place to be sick.
- Samuel Goldwyn

Improving Patient Confidence in the Health Care System

What is the health care system? A local physician's office or HMO in which a patient may see one of several providers, including advanced practice nurses, physician assistants, and physicians? A community-wide network of providers, encompassing many providers and services, from durable medical equipment suppliers to radiology offices, from doctors' offices to long-term care facilities?

Or does it include the range of community-based services that serve the seriously ill and dying, such as Meals-on-Wheels, various forms of visiting volunteer services, worship communities, and senior centers? Perhaps units within one system, such as different hospital wards, really function as a system.

It is, of course, all of these elements and more. With so many large and complex organizations delivering, organizing, and paying for care, it is little wonder that the "system," which is actually many subsystems, is often fragmented.

From a patient's perspective, the system can be impersonal, uncommunicative, and disorganized. Because our health care system seems so reliable in treating infections or dealing with medical crises, patients expect it to perform well for them when they are dying. Patients rely on the system and its providers to do the right thing for them - but problems occur at many points on the care continuum, from a failure to transfer patient records to a lack of plain talk about dying, from being seen by strangers to dying in hospitals rather than homes.

Health care providers and organizations struggle to balance competing demands for their time and attention - the sheer volume of record keeping, for instance - that remembering or trying to collaborate with others may receive low priority. Organizations and providers may not communicate with one another quickly enough. Patients may be bounced from one setting to another without much notice or explanation. When patients and families navigate this expanse, they may often feel that they've set out without compass, map, or guide, only to find themselves in a strange and frightening place. In such cases, quality of care is diminished.

Sample Patient Case

In the last 9 months of Mrs. Hs life, she never really knew which health care professional was leading her care. There was the orthopedist, who read her x-rays and recommended she talk to an internist. There was her primary care doctor of 45 years, who retired and left no referrals to other physicians. There was the internist, who was younger than her grandchildren, and seemed too inexperienced to empathize with what she was going through. And there were the oncologist, the urologist, another orthopedist, a rheumatologist, a physical therapist. . . When she was referred to hospice, it came with a new team of strangers--licensed practical nurses, a nurse for the morphine pump, a chaplain, a few social workers, and an ever-changing cast of health aides. They sometimes mentioned another doctor, a hospice doctor, but Mrs. H. never met him. Once, the internist showed up at her home to check on her. A private woman, the constantly changing cast of characters, whom she viewed as strangers intruding on her life, irritated her. Repeating her medical history over and over to different people exhausted and saddened Mrs. H. and her family.

Along the way, Mrs. H. lost her privacy, along with any faith that the system would do well in caring for her. In her final days, a different nurse came to the house every day to cover for the regular hospice nurse, who was on vacation. Their failure to coordinate care was evidenced by their differing approaches to relieving the pain of Mrs. Hs pressure sores. One told the family to ignore the sores, another told the family to change the dressing, another told the family to turn Mrs. H. every few hours, and still another told the family not to move her, since she did not have long to live.

The last 72 hours of her life were spent on the inpatient hospice ward, where a new group of doctors and nurses came in and out, and where her family unraveled, confused and afraid, while she lay in pain, sometimes asleep.

Mrs. H., her family, and her family caregivers realized too late - and her professional providers never seemed to realize - just what such fragmented care means for dying people. As more groups begin to at least think about providing comprehensive, integrated care for the dying, perhaps the current situation will improve. Continuity of care has to be at the core of reliable and trustworthy systems of care for dying patients and their families. Continuity can ensure that patients and families know who their care team is, who is in charge, and where to turn for help and guidance.

Creating continuity within your organization and throughout your community may be a daunting task. In the IHI series, groups rarely tackled the problem, and even then, they rarely achieved much. The status quo - which does not object to "dumping" patients from one facility to another, which has any number of professional caregivers coming in and out of patients' lives, which does not always know patients' wishes and preferences - is an embarrassment to us all. Recognizing this, however, should not paralyze us. Instead, our poor track record for continuity of care should motivate us to improve things now. Through the Plan-Do-Study-Act model for change, even this enormous task can be broken down into manageable components, problems for which solutions seem evident. Even minor changes, such as guaranteeing that a patient will always know who is leading his or her care team, can lead your organization to improved continuity of care.

Each day, most of us encounter some form of technological wizardry that tracks one or another aspect of our lives, from the kind of toilet paper we usually buy to the location of our express mail packages. The proliferation of such technology has not yet enabled much improvement in the health care industry. Privacy issues notwithstanding, it seems reasonable to consider using bar codes, for example, to track where patients are in a health care system, which providers they have seen, and which medications they are on. Some managed care organizations rely on technology to track patient care and costs and can report on which provider saw which patient when and for what, and what treatment was recommended. Perhaps health care organizations can develop similar systems to communicate with and about patients and their needs and can extend that tracking process across provider organizations. Probably, though, nothing quite fully takes the place of a doctor or nurse who has known the patient and family for some time.

In This Chapter

Some organizations have begun to demonstrate just how coordinated health care improves care of seriously ill and dying patients. This chapter features the work of several programs and describes what can be done to create coordinated care in other organizations. Suggestions include:

Comprehensive, coordinated care reflects the complexity of human life, with its rich array of physical, emotional, social, and spiritual needs, and allows the health care system to better meet patient needs.

Innovators Need to Know

  • Organizations can begin to create continuity by making and keeping promises to patients.
  • Tracking the number of different health care providers a patient sees in a short period is a good way to measure continuity of care.
  • Patients and families need to meet the health care team and become familiar and comfortable with several members, while having a single point of contact.
  • Reducing transfers, especially of dying ICU patients, can reduce family distress.

7.0.1 Case Study - On Lok Senior Health Services
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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ ] and Oxford University Press. All rights reserved.

For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ ].

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