To explore the expectations and goals of chronically critically ill patients, researchers interviewed 30 patients and 20 surrogates at a long-term acute care hospital.1
Daniela Lamas, MD, the study’s lead author, expected that the patients would value life prolongation above all other goals.
“However, I found that living as long as possible, no matter what, was, in fact, the least important priority ranked for the majority of people surveyed,” says Lamas, a pulmonary and critical care physician at Brigham and Women’s Hospital and instructor in medicine at Harvard Medical School in Boston.
Life prolongation fell below cognitive impact and physical function for the majority of people surveyed. This was true for both patients and families.
Chronically critically ill patients are frequently cared for in long-term acute care hospitals, yet little is known about their experience in this setting, notes Lamas. “The results of our work suggest to me that it is our ethical duty to try to understand our patients’ goals,” she says.
The findings indicate overly optimistic expectations about returning home: Nearly 80% identified this a goal, but only 38% were at home at one year. Additionally, unmet palliative care needs suggest the need to integrate palliative care within the long-term acute hospital, the researchers concluded.
Lamas says clinicians have an ethical obligation to try to give patients the care they want and not to give care that patients do not want, or care that does not move patients toward their goals.
“Long-term acute care hospitals, even if it is aggressive care for ill patients, can be appropriate if it aligns with a patient’s goals,” she says.
Palliative care continues to be seen by many patients, families, and even healthcare providers as “the last resort,” says Ruby Rajendra Shanker, MBBS, MHSc (Bioethics), the bioethicist for Canada’s Toronto General Hospital and Women’s College Hospital. “On the contrary, including appropriate palliative care support much earlier may help alleviate pain and ensure better management of symptoms for patients.”
Therapeutic relationships between chronically critically ill patients and healthcare providers tend to develop over extended periods of time. When the patient begins to decline, it can be very hard for healthcare providers to let go.
“Such attachment may impact their ability to fully support the patient in good end-of-life decision-making,” says Shanker. Another obstacle: Some patients fear they’ll disappoint family or clinicians by robbing them of their sense of purpose in advocating for active treatment.
While healthcare providers’ attitudes toward palliative care have improved significantly in recent years, some still fear it will be seen as “giving up.”
“These attitudes can impede essential efforts toward advance care planning, and understanding the patient’s capable wishes when it is still possible,” says Shanker.
Even if families know the patient’s wishes very well, some have difficulty stepping into the role of decision-maker when faced with a rapidly declining clinical scenario. “The suggestion of palliative care in one such case created much despair for the family, causing them to impede the clinical team’s efforts to speak with the patient,” recalls Shanker.
The family ardently believed that they were protecting the patient’s ability to hope by preventing end-of-life talk. “In such situations, the bioethicist, having no therapeutic relationship with the patient and representing neutrality, may have more success communicating with families,” says Shanker.
Shanker centered the discussion around quality of life: “I was able to encourage a dialogue between the family and the patient, and support the family in appreciating the value of palliative care as aligned with the patient’s expressed wishes.”
- Lamas DJ, Owens RL, Nace RN, et al. Opening the door: The experience of chronic critical illness in a long-term acute care hospital. Crit Care Med. 2017; 45(4):e357-e362.
- Daniela Lamas, MD, Pulmonary and Critical Care, Brigham and Women’s Hospital, Boston. Phone: (617) 732-5499. Email: firstname.lastname@example.org.
- Ruby Rajendra Shanker, MBBS, MHSc (Bioethics), Bioethicist, Toronto General Hospital/Women’s College Hospital, Toronto, Ontario, Canada. Phone: (416) 340-4800 ext. 8750. Email: Ruby.Shanker@uhn.ca.