Improving End of Life Care

Getting the care you want and need

Hospice care is playing a primary role in allowing people to get the type of end of life care that they desire. Here, we have an article from Statesman.com, that uses information from the Austin, TX area to demonstrate this fact:

Sometime ago, early in my practice in Austin, a patient, well-aware she was dying of her cancer, talked to me about how she wanted to die. She would be looking out at the woods behind her house with her family near, still sensing the pulse of life around her. Her wishes were realized, and we can say she "died in place."

As important as it is to complete our wishes about the circumstances of our death, this often does not happen. Circumstances conspire to impede our wishes, and we die in the hospital or in pain, or more often than necessary, both.

Yet, as we shall see, it does not have to be this way.

That we have preferences about how we die is not in doubt. We have seen this in how we describe our deaths.

On a day last summer (Aug. 4, 2010) the following appeared on separate patients in the American-Statesman in the obituaries: " were at her side when she died ," " died peacefully with his family by his side ," " passed peacefully ," " passed away at his home ," and " passed away peacefully at home."

These sentiments are supported by a national survey of over 2,500 Medicare-age patients that indicated 86 percent wanted to die at home, only 9 percent in the hospital.

Yet we know that for cancer patients specifically, this is not how things play out.

A recent report of the Dartmouth Atlas Project (Nov. 16, 2010) showed that 29 percent of Medicare-age patients dying of cancer die in the hospital; 24 percent were admitted to the intensive care unit (ICU) in the last month of life.

Additional indicators of aggressive care were identified: chemotherapy in the last two weeks of life, low hospice admission rates and hospice admissions that occurred three days or less before death.

Moreover, project data indicate that aggressive care in these cancer patients does not mean better care.

A recent paper by a team led by Dr. Jennifer Temel of Massachusetts General Hospital reinforced this point.

In this study of lung cancer patients, one group received standard care, and the other group received standard care plus consultation directed toward symptom control and quality of life. This latter group received less aggressive care with fewer hospitalizations and more hospice enrollments. Notably, in this group, symptoms were better controlled, and family satisfaction was better. And these patients lived at least as long.

Cancer patients in Austin generally receive less aggressive care at the end of their lives than those in other areas in the country.

In Austin, 23 percent of cancer patients die in the hospital. Hospital days in the last 30 days of life are 4.4 with a national mean of 5.1; days enrolled on hospice are 10.6 with a national mean of 8.7. However, chemotherapy in the last week of life was 7.8 percent of patients with a national mean of 6 percent.

Patients in our own oncology practice also received less aggressive treatment than national norms.

Seventy-five percent of patients were enrolled in hospice at the time of death, with 58 percent dying at home, 28 percent dying at Hospice Austin at Christopher House. Over 80 percent of these patients had pain well controlled.

For patients not on hospice who died in the hospital, the last measurement indicated poorly controlled pain in 37.5 percent. A hospice enrollment of three days or less was associated with more severe pain levels.

The critical issue in this tension between wished-for and actual place of death appears to be communication.

A study of oncologists done in 2002 indicated that 37 percent discussed resuscitation orders at the time of diagnosis, 41 percent only when treatment was not working, 10 percent just before hospice referral and 12 percent a few days or hours before death. In contrast, 90 percent of patients want to talk about advance care planning at the time of diagnosis and want to discuss this while they are still well.

We know, from a recent study by a team led by Dr. Alexi Wright of Harvard Medical School, that if this conversation does not occur at all, patients are more likely to be admitted to the ICU and less likely to receive hospice care, while their families are more likely to have regret and a higher risk of depressive disorders.

The cancer community has recognized these shortcomings, and medical schools now more regularly offer courses in communication. There are also programs, such as Respecting Choices and Oncotalk, available to practicing professionals.