Ongoing discussion on end-of-life care is needed
Executive Summary
An ongoing conversation about patients’ end-of-life wishes is needed because patient preferences aren’t necessarily consistent. According to ethicists, ideally providers should start the conversation with the patient when the patient’s condition is relatively stable and not in crisis.
• Bioethicists can support providers in starting the discussion with the patient.
• Videotaped discussions allow family members to hear the patient’s own words.
• Patients may want more life-extending care at the end of life than they thought they would.
Patient wishes may change
Documentation of a patient’s end-of-life wishes is "a starting point. But what’s more important is having ongoing conversations," according to Susan Gaeta, MD, a clinical ethicist, attending physician, and associate medical director in the Department of Critical Care at The University of Texas MD Anderson Cancer Center in Houston.
"Advance care planning has been an issue for a long time, and nationally, we have not been very successful in standardizing a process that works," she says.
Immediately after a young man is diagnosed with multiple sclerosis, for example, he may say that living in a wheelchair is unacceptable to him. "After five years, he may get used to the diagnosis and think that his quality of life is good, so he informs his loved ones and health care providers that if he is in a wheelchair it’s OK," says Gaeta.
On the other hand, if a patient is to be readmitted to the intensive care unit (ICU), he or she may recall their prior admission as unpleasant due to delirium or an actual memory, and may not want to be transferred to the ICU.
"The problem is that documentation is static," says Gaeta. "The important thing is to start the conversation with the patient when it’s not a crisis — not when the patient is in the hospital in respiratory distress."
If the providers feel that they do not have enough time in their busy day, or are not comfortable having the conversation, a bioethicist or social work counselor can support the providers in doing so, says Gaeta.
Revisit discussion
Gaeta uses an Advance Care Planning Structure Documentation note to document her conversations with her patients. "What is so fabulous about this note is that it can be filled out by any care team member, including nurses or midlevel providers," she says.
Providers can document the prognosis and explain the treatment plan. Social workers can document the patient’s goals and values, and the chaplain can indicate whether spirituality and/or religion are important to the patient.
"After the first conversation with the patient, any number of trigger points’ can be used to revisit the discussion," says Gaeta — such as outpatient clinic visit, a change in the patient’s health status, an ICU admission, or an event such as marriage, divorce, or death in the family.
"In addition, the medical record states when the note was last updated," says Gaeta. If family members insist that a patient would have wanted to continue life-sustaining treatment, the team can use the note to support the patient’s most recent wishes.
"That’s not to say it’s going to solve everything, but it’s definitely a start," says Gaeta. "There will always be cases where someone will question whether the patient noted their wishes under duress."
Ideally, patients will have a conversation with the provider that is documented, with a medical power of attorney present, and share that same conversation with family members. "In some cases, discussions are even videotaped," says Gaeta. "This allows family members to hear the patient expressing their wishes in his or her own words."
Currently, the Centers for Medicare & Medicaid Services requires hospitals and other health care entities to ask about the availability of their advance directives upon admission to the hospital, in order for that institution to receive payment by Medicare or Medicaid. "But we need to go beyond advance directives, and focus on advance care planning," argues Gaeta.
Preferences aren’t necessarily stable
There needs to be recognition of the fluidity of people’s desires and preferences at the end of life, and concern not just about the patient’s prior wishes "but about what is best for the patient in the here and now," says Alison Karasz, PhD, one of the study’s authors and associate professor in the Department of Family and Social Medicine at Albert Einstein College of Medicine in Bronx, NY.
"In cases where there is conflict between the family and hospital staff about the patient’s best interest, hospital staff often try to play the prior wishes’ card as if to suggest that ending life is what the patient would have wanted,’" says Karasz.
Patient preferences are not necessarily stable, explains Karasz, and patients often want more life-extending care at the end of life than they thought they would.
In a 2007 study, researchers observed and recorded 24 decision-making meetings between hospital staff and family members of elderly patients identified as being in the last stages of illness, who were unable or unwilling to make the decision for themselves.3
"Our research found that when families sit down and try to make a decision, hospital ethicists often try to encourage them to focus on prior wishes, since prior wishes are almost always about refusing life-extending care," says Karasz, one of the study’s authors.
Karasz says that there is little consistency between what patients think they would want in terms of end-of-life care, and what they actually do want when they get to the final days of life. "It is not my opinion, based on our study and on the available data, that patients’ prior wishes are always the most reliable guide to ethical decision-making at the end of life," she says.
Consideration of a patient’s best interests generally took priority over the patient’s wishes, according to a 2010 study in which researchers observed and recorded 26 decision-making meetings between hospital staff and family members.2
"We found that hospital ethicists sometimes blatantly advised families that, If your parent didn’t express a wish not to have life-extending care, that doesn’t mean she didn’t think it,’" says Karasz, the study’s lead author.
Clinical ethicists often believe that stopping life-extending care is best for the patient, she says, and point to the patient’s prior wishes to persuade family members. Karasz is not in favor of documenting prior wishes in patient charts if it means that life-extending care would be automatically denied because of the presence of such documentation.
"I believe that the current state of affairs, confusing and messy as it is, leads to important debates among family members and hospital staff in a small number of conflictual, ambiguous situations that do arise," says Karasz. "Most of the time, things go more smoothly."
- Karasz A, Sacajiu G, Kogan M, et al. The rational choice model in family decision making at the end of life. J Clin Ethics 2010; 21(3):189-200.
- Watkins LT, Sacajiu G, Karasz A. The role of the bioethicist in family meetings about end of life care. Soc Sci Med 2007;65(11):2328-2341.
- Susan Gaeta, MD, Associate Medical Director, Department of Critical Care, The University of Texas MD Anderson Cancer Center, Houston. E-mail: [email protected].
- Alison Karasz, PhD, Department of Family Medicine, Albert Einstein College of Medicine, Bronx, NY. Phone: (718) 430-8756. E-mail: [email protected].
