Conversations About End-of-Life Care
September 25, 2012
When a parent or loved one is dying, few people are prepared. In the last few days or weeks of most patients' lives, family members visiting the patient rarely talk about what's best for the patient. Most often, they wait and worry.
The unfortunate truth about death and dying is that people are not prepared to talk about it, and so they're not prepared to deal with it either.
Therefore, caregivers must facilitate these conversations because our advice and counsel are needed and often welcomed at this time. Too often, however, those conversations don't happen or when they do, they are not quality conversations. When a patient faces a life-limiting illness, nurses, case managers and other providers delivering end-of-life care need to determine what patients know about their disease processes and what they want to know. Based on this information, providers can lead discussions regarding patients' care wishes.
In the absence of these conversations, patients don't get what they want and hospitals and long-term care facilities needlessly spend inordinate amounts of money on these patients. Studies show that costs often are highest in the last 6 to 12 months of life. That's why nurses and case managers delivering end-of-life care have an opportunity to serve patients and family members and to conserve resources as well.
Here's a typical scenario. A 90-year-old woman is admitted to the hospital. When her adult children are present, the nurse or case manager asks what to do if their mother's heart stops. Should staff restart her heart, for example?
Almost without thinking, the family members say, "yes, of course." But the conversation may not include all the relevant facts about the mother's condition. If the mother has chronic obstructive pulmonary disease and diabetes, the chances that the hospital staff would succeed at restarting her heart are less than 10%. In addition, the likelihood that this woman would be as healthy as she was before the event are less than 1%.
In this situation, neither the family members nor the hospital staff are making an informed decision about a common procedure, resuscitation.
Too often we default to providing heroic measures. Seeking to extend life, we believe these measures are appropriate, and for many people they are, especially those who are young and otherwise healthy. But heroic measures are not for all.
For some patients, it may be best to be at home or in hospice care. The goal of hospice is to provide comfort for terminally ill patients and their families, not to cure the illness.
Consider the case of a stage-four lung cancer patient. Regardless of age or infirmity, if this patients suffer an acute episode, he is often sent back to the hospital for chemotherapy. While this treatment may extend life by a few days or weeks, it also can drain the patient's vitality, and, of course, chemotherapy is a costly and unpleasant treatment.
A better option for these types of patients may be a hospice program where they would have much better symptom control and pain management, and they might live longer as well. Hospice care has the added benefit of being a lower-cost setting for these patients.
In the proper setting-meaning, either in a hospice facility or at home with hospice-these patients get the best, most appropriate treatment, while also helping to control the rising cost of care.
These lessons are important for nurses and case managers today because hospitals, nursing homes, and other health care facilities need to control costs, particularly when new payment mechanisms are introduced. As facilities move away from fee-for-service payment and instead get a set fee for each patient encounter, then all providers need to be conscious of delivering care in the most appropriate and cost-effective settings.
| Advance planning includes education of the patient, family members and significant others including:
--discussing the expected or anticipated course of the disease
--explaining final treatment options
--clarifying acceptable treatment preferences
--preparing wills and advance directives
Source: Athena Forum, LLC, Rockville, Maryland, 2012 (www.athenaforum.com).
In addition, providing the right care in the right setting for each patient may mean nurses and case managers can help to improve a facility's patient and family satisfaction scores. In a competitive health care market, more payers are evaluating these scores today and the federal Centers for Medicare & Medicaid Services (CMS) is posting these scores on the internet at www.hospitalcompare.hhs.com.
CMS wants to know how well providers communicate with patients and how well they manage patients' pain. In addition, nurses and case managers need to know how to manage patient's symptoms because when pain and symptoms are managed poorly, patients remain in the hospital, again driving up costs needlessly.
At Sutter, most of our hospice patients are in their own homes, the home of a family member, or in skilled nursing facilities. In any of these settings, the central role of the nurses and case managers is to help patients make the right decisions about their care and doing so means helping patients get to right treatment in the right setting. By moving patients to the most appropriate settings, nurses and case managers help to control costs by decreasing hospital length of stay and by preventing inappropriate readmissions.
Given CMS' efforts to reduce readmissions, ensuring that patients are getting care in the most appropriate setting is more important than ever.
The whole point about ensuring that patients at the end of life get the most appropriate care is that usually they prefer hospice care, and this care is usually the most cost effective and humane.
James McGregor is medical director at Sutter Care at Home, Sacramento, Calif. He is also the course director for the end of life and palliative care course of Athena Forum, LLC, an online training platform (www.AthenaForum.com) for nurses, case managers and social workers.