Family members of patients generally overestimate the potential benefit of life-sustaining treatments in the intensive care unit (ICU), according to Paul Hutchison, MD, MA, assistant professor in the Division of Pulmonary and Critical Care Medicine at Loyola University Chicago’s Stritch School of Medicine.
“For example, cardiopulmonary resuscitation [CPR] is a salvage therapy used only when the patient’s illness has progressed to the point of cardiac arrest,” he says. Families typically don’t realize that performing CPR will not treat the underlying condition that caused the cardiac arrest. Similarly, hemodialysis is a therapy that can replace the function of the kidneys, but it does not improve renal function.
“When clinicians make recommendations against performing CPR or starting hemodialysis, they are implying that these life-sustaining treatments will not accomplish their ultimate goal, which is recovery from the underlying illness,” says Hutchison.
Clinicians must use lay language to describe a patient’s condition, prognosis, and plan of care, advises Hutchison. “Life-sustaining therapies should be described in a way that is accessible to the family, and the goals of the therapy should be clearly defined,” says Hutchison. “Medical abbreviations and jargon, such as ‘HD’ [hemodialysis] and ‘pressors’ [vasopressors] should be avoided.” Similarly, the term “futile” has many connotations and could be misconstrued by a family member. “Clinicians must remember that many medical terms are not part of a lay person’s vocabulary,” says Hutchison.
In some cases, therapies will help to achieve a level of health that would be unacceptable to the patient or the family; this must be explored further. For instance, some therapies, such as a tracheostomy, may require the patient to reside in a long-term care facility for the rest of his or her life. “It is essential that the burdens of chronic critical illness be thoroughly discussed with families in these situations,” says Hutchison.
Clinicians often assume they understand what qualifies as an acceptable quality of life for critically ill patients. However, says Hutchison, while clinicians know what they believe to be the quality of life for themselves, this may differ substantially from the views of their patients.
“Additionally, providers sometimes comment on their patients’ suffering,” says Hutchison. “But suffering is a complex and deeply personal experience that cannot be attributed to another person.”
Thus, when discussing goals of care with families, providers need to be cautious about the inferences they make about someone who they have never met before. “Trust is the most important aspect of the provider-surrogate relationship that can facilitate understanding about these issues,” says Hutchison.
Often, providers immediately ask for code status on a patient newly admitted to the ICU, at a point in time when the family is terrified that their loved one is acutely ill. “Conversations about the limitation of treatments are most successful when there is a trusting relationship between the family and the provider, and the family feels that the provider has their best interest at heart,” says Hutchison. This means that updates should be frequent, honest, and conveyed empathically.
“For many families, only time will help them appreciate the limitation of life-sustaining therapies,” says Hutchison. In these cases, a time-limited trial of dialysis or mechanical ventilation can help assure the family that everything has been tried.
“The provider and family then agree that the therapies will be discontinued if they are not accomplishing their goals within a specified period of time,” says Hutchison.
Families often seem to perceive death as a medical misadventure, and as something that is not inevitable, says F. Keith Stirewalt, PA, MBA MDiv, an advance care planning consultant/coordinator at Wake Forest Baptist Medical Center in Winston-Salem, NC.
“We struggle against misconceptions that death is the result of not doing something that we should have done, or doing something we should not have done,” he adds.
Institutional distrust is another barrier. Families sometimes suspect that the motivation of the hospital team is to make money by keeping people in the ICU, or that clinicians who bring up hospice are doing so because they don’t value the patient in front of them.
“We must realize that the history of medicine in the U.S. provides historical basis for medical institutional distrust, even if the historical events have no correlation to the current situation,” says Stirewalt. He says that empathetic presence “will go a long way toward taming institutional distrust” and needs to be taught in medical training programs and reinforced in practice.
Stirewalt says that when talking about medical trajectory, bioethicists need to address the following:
• The realities of CPR.
“Too frequently, patients articulate that their ideas about the successfulness of CPR are based on television shows, where most resuscitated patients survive to live at their pre-arrest baseline,” says Stirewalt. A 2104 study of 358,682 CPR recipients showed that only about 2% of those with chronic obstructive pulmonary disease, congestive heart failure, malignancy, and cirrhosis were discharged home and survived at least six months without readmission.1 “In reality, patients with chronic illness who receive CPR have a relatively low chance of leaving the hospital alive, and often die in the ICU,” says Stirewalt.
• The realities of reasonably expected function post-discharge.
“Have the patient or family describe what creates joy in the patient’s life,” says Stirewalt. Ethicists can ask such questions as: “What makes life worth living?” “What level of functioning is involved?” and “What are the intersections of the functions of the life desired and the life anticipated?”
Providers sometimes struggle with their own misconceptions. Some assume that patients and their families don’t really want the truth about the prognosis. “While it is true that they often find the truth hard to assimilate, they want and deserve to hear the truth, in terms and at a pace they can absorb,” says Stirewalt. This may mean providing the information in a sequence of encounters.
Providers may fear that patients will lose hope and die earlier after end-of-life conversations. “In fact, many studies indicate the opposite: that patients who adopt earlier involvement of hospice care tend to live, instead, longer, with better quality of end-of-life,” says Stirewalt.2,3
- Stapleton RD, Ehlenbach WJ, Devo RA, et al. Long-term outcomes after in-hospital CPR in older adults with chronic illness. Chest 2014; 146(5):1214-1225.
- Adams CE, Bader J, Horn KV. Timing of hospice referral: Assessing satisfaction while the patient receives hospice services. Home Health Care Manag Pract 2009; 21(2):109.
- Rickerson E, Harrold J, Kapo J, et al. Timing of hospice referral and families’ perceptions of services: Are earlier hospice referrals better? Journal of the American Geriatric Society 2005; 53:819–823.
- Paul Hutchison, MD, MA, Assistant Professor, Division of Pulmonary and Critical Care Medicine, Stritch School of Medicine, Loyola University Chicago (IL). Phone: (847) 421-9796. Email: Paul.Hutchison@lumc.edu
- F. Keith Stirewalt, PA, MBA, MDiv, Advance Care Planning Consultant/Coordinator, Wake Forest Baptist Medical Center, Winston-Salem, NC. Phone: (336) 716-5811. Fax: (336) 716-5075. Email: firstname.lastname@example.org.