Compassion Corner: When Families are Involved with the Care of Their Critically-Ill Loved Ones

Compassion [kuhmpash-uhn] noun
A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering.

Compassion Corner is a weekly series from Patient Worthy that will focus on the subject of compassion in the healthcare and rare disease space. In this series, we explore the role of compassion in this field and what it means for caregivers, patients, and others.



Reuters Health published an article from JAMA Internal Medicine in April 2019 about doctors speaking with patients’ families and addressing patients’ treatment preferences when they are unable to advocate for themselves. The general term is shared decision-making.

Researchers assessed data from a study of 244 conversations held between patients’ families and their clinicians only to find that patients’ preferences and values are not being addressed.

The topics covered included which treatment should be recommended and the timing of aggressive therapies versus when to limit treatment and simply make the patient comfortable.

Patients in the study averaged 58 years of age, were generally in acute respiratory distress, and were confined to ICUs (intensive care units).

Shared Decision Making

The conversations that have been assessed in the study are critical factors in shared decision-making. They depend on clinicians spending a reasonable amount of time explaining the negative and positive aspects of treatment options. They also depend on patients and their families to describe their expectations.

The goal of shared decision-making is to improve patient satisfaction. And most importantly, it ensures that the treatment chosen provides the highest and best outcome for patients and their families.

The overall evaluation of the 244 conversations is that it leaves considerable room for improvement.

The report in JAMA cited that sixty-eight percent of the study’s conversations included patients’ end-of-life care preferences. However, only forty-four percent of patients’ values were actually applied to treatment decisions.

Dr. Leslie Scheunemann of Pittsburgh University’s Medical Center said in a recently-circulated email that there are many advantages to good communication.

  • Patients and families would have spiritual or religious time together
  • could attend to items on their bucket list, or
  • they may choose to spend their last hours at home with their family.

Also, symptom management may improve and emotional support would be provided to families.

On the contrary, poor communication can result in treatment that the patients might not want and create stressful decision-making situations for families.

Only a handful of patients, approximately thirty-six percent, discussed their end-of-life care with clinicians. These discussions covered decisions such as retaining social or physical functioning or spirituality.

More surprisingly, in only eight percent of the study conversations did clinicians suggest treatment options according to patients’ preferences.

Terri Fried M.D. of New Haven’s Yale Medical School commented in an editorial that physicians appear to make decisions for patients based on the process but patients and their families care more about the outcome.

Dr. Fried cautions that treatment decisions must be made timely while the patient is in ICU. If not, then the patient’s wishes will most likely be unfulfilled.


Dr. Fried concluded by saying that patients and their families must ensure that they receive information about all options and outcomes. He suggests that one strategy might be for the families and patients to ask what the best and worst-case scenarios would be from each option.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

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