Patient preferences at end of life overlooked

Treatment plans don't consider their wishes

If a nursing home resident has a urinary tract infection, he or she may want to avoid the discomfort and side effects of being transported to the hospital for intravenous antibiotics, and would rather be cared for with medications in the nursing home.

Too often, however, the patient's wishes aren't even taken into consideration in this scenario, says John G. Carney, MEd, president and CEO of the Center for Practical Bioethics in Kansas City, MO. Nursing home patients are not routinely asked about their preferences and values at the end of life, he explains, so these aren't considered when treatment goals are determined.

"We don't integrate any questions around the quality of life except until the very end — and then, these are usually asked only after a referral to palliative care or hospice," he says.

In fact, quality of life is more important to many patients than clinical interventions, argues Carney. "Since we don't have the mindset to even be asking those questions or addressing those issues, we leave them out of the equation," he says. "That's the biggest deficit that we have with end-of-life care."

Default is to treat

Caregivers typically don't even talk about a patient's quality of life and functional status when determining a treatment plan, according to Carney.

"In most cases, our treatment plan defaults to standard of care for an otherwise healthy patient, regardless of how sick a patient may be," he adds. "If we asked these questions and paid attention to what people said, we would not do some of the things that we currently do."

If the patient can't answer these questions for themselves, adds Carney, caregivers could ask someone who knows the person well what they would want.

Early in his career, Carney was part of a team at the National Hospice and Palliative Care Organization that identified three outcomes to assess quality end-of-life care: Safe and comfortable dying, self-determined life closure, and healthy grieving.

Even now, however, palliative care and hospice professionals lack good evaluation measures to assess end-of-life care, says Carney. "Attention to quality of life, and preferences and values, is so critically important in this part of health care," he says. "There are outcomes that the patient wants to see, that we simply don't ask about."

Many patients are far more interested in functional status than survival, adds Carney. "We know that if we sit down and talk to them about survival interventions to prolong their life, they don't value the same things that an otherwise healthy patient would," he says.


  • John G. Carney, MEd, President and CEO, Center for Practical Bioethics, Kansas City, MO. Phone: (816) 979-1353. Email:
  • Joan M. Teno, MD, MS, Professor of Health Services, Policy, and Practice, Warren Alpert School of Medicine, Brown University, Providence, RI. Phone: (401) 863-9627. Email: