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Dying Wish


 

Most Americans surveyed about their preferred place of death say they want to die at home.1 Nevertheless, many dying people are not able to realize this wish. One 2003 study found that nearly 90% of terminally ill cancer patients asked to choose where they would prefer to die cited their homes. Only one-third of those patients were able to make this desire a reality.2

The reasons behind the divergence between preference and actual place of death are complicated, says Rachelle Bernacki, MD, MS, assistant clinical professor, Geriatrics and Palliative Care, and a palliative care specialist with the University of California, San Francisco Medical Center Hospitalist Service. “I think most people envision … [dying] at home, but sometimes that’s just not feasible, for multiple reasons. When the reality sets in, there has to be a good plan in place at home—meaning, enough people and resources to keep that person at home.”

Is Death Imminent?

Dr. Bernacki points out that many studies on dying preferences are conducted when the patient is not ill or actively dying. The scenario becomes much more complex when patients are in crisis or on an end-of-life trajectory. In initial assessments, hospitalists should try not only to ascertain the patient’s health status but also to ask respectfully about their goals for care.

“It might not be appropriate [to ask] every patient, ‘Where do you want to die?’ ” suggests Dr. Bernacki. It can be appropriate, though, to ask patients about their experiences with their current illness and to talk about some of the goals they hope to achieve in the next week or month.

Although it is not possible to predict exactly how long a person will survive, the signs of critical illness can provide an appropriate window in which the physician can ask a patient, “If you were to die, where would you want to be, and what is most important to you?”

I think most people envision…[dying] at home, but sometimes that’s just not feasible, for multiple reasons. When the reality sets in, there has to be a good plan in place at home—meaning, enough people and resources to keep that person at home.

—Rachelle Bernacki, MD, MS, assistant clinical professor, Geriatrics and Palliative Care, UCSF Medical Center Hospitalist Service

Practitioners skilled in end-of-life care cite several attributes characteristic of patients who are actively dying, such as:

  • Refusal of food and liquids;
  • Decreased level of awareness;
  • Dyspnea (shortness of breath), including erratic breathing patterns;
  • Mottled skin that is colder to the touch, along with blue toes; and
  • Abnormal breathing sounds due to secretions in the lungs.

Honor Their Choices

Researchers cite many factors that determine whether a terminally ill cancer patient dies in the home or in an institution, including gender, race, marital status, income level, and available health system resources. In a Yale (New Haven, Conn.) epidemiological study, men, unmarried people, and those living in low-income areas were at higher risk for institutionalized deaths.3

Dr. Bernacki has found that the two most important determinants of whether a patient will go home to die are the patient’s condition and their resources at home. Sometimes transporting a patient is not practical because the patient may be so close to dying that there is a risk of death en route. Or the patient’s symptoms may not be controlled with oral pain medications and may require frequent IV dosing, in which case discharge is not feasible. Barriers at the home site include the lack of an identified primary caregiver and the unavailability of qualified hospice personnel and/or medical supplies.

For in-depth learning about palliative care topics, be sure to visit these sessions at the upcoming SHM Annual Meeting in Dallas, May 23-25:

  • Palliative Pain Management: Thurs., May 24, 10:35-11:50;
  • Non-Pain Symptom Management: Thurs., May 24, 1:10-2:25;
  • Ethical and Legal Considerations of Palliative Care and End-of-Life Care: Thurs., May 24, 2:45-4:00;
  • Prognostication and PC Management of the Non-Cancer Diagnosis: Fri., May 25, 10:15-11:35; and
  • Communication Skills and How to Conduct Family/Care Conferences: Fri., May 25, 1:35-2:55.

When the Hospital Is Preferred

In some situations, says Dr. Bernacki, “some family members feel very uncomfortable with the thought of their loved one dying at home.” Sometimes the disease process advances so quickly that the palliative care team cannot titrate the pain medicines to the right amount to allow discharge. Family members can become alarmed and may feel ill-prepared to handle difficult symptoms of the dying patient, such as uncontrolled nausea or dyspnea.

“So we have to just make an educated guess as to how long we think they have and how important it is to that patient or that family to be at home.” Often, the care team and family realize that it makes more sense not to move the patient but rather to try and make everything as comfortable as possible in the hospital.

The UCSF Palliative Care Service team, established by Steve Pantilat, MD, associate professor of clinical medicine, Department of Medicine, University of California, San Francisco, has access to two in-hospital comfort care suites, where family members can stay with their loved ones at all times.4 Dr. Pantilat is also the past-president of SHM and the Alan M. Kates and John M. Burnard Endowed Chair in Palliative Care at UCSF.

In all cases, says Dr. Bernacki, hospitalists dealing with dying patients should remain cognizant that they are treating not only the patients but the family members as well. “Part of palliative care is making sure that the daughters, sons, and spouses are all well cared for,” she emphasizes. Ascertaining goals and negotiating what’s possible are the keys to good palliative care. TH

Gretchen Henkel writes frequently for The Hospitalist.

References

  1. Tang ST, McCorkle R, Bradley EH. Determinants of death in an inpatient hospice for terminally ill cancer patients. Palliat Support Care. 2004 Dec;2(4):361-370.
  2. Tang ST, McCorkle R. Determinants of congruence between the preferred and actual place of death for terminally ill cancer patients. J Palliat Care. 2003;19:230-237.
  3. Gallo WT, Baker MJ, Bradley EH. Factors associated with home versus institutional death among cancer patients in Connecticut. J Am Geriatr Soc. 2001 Jun;49(6):771-777. Comment in J Am Geriatr Soc. 2001 Jun; 49(6):831-832.
  4. Auerbach AD, Pantilat SZ. End-of-life care in a voluntary hospitalist model: effects on communication, processes of care, and patient symptoms. Am J Med. 2004 May 15;116(10):669-675.

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