Helping loved ones at time of patient's death

Should family members be present during resuscitation?

The Ethics Group provides discussions on questions of ethics and professionalism in medical practice. Readers are encouraged to submit questions and comments to [email protected], or to Ethics Group, AMA, 515 N. State St., Chicago, IL 60654. Opinions in Ethics Forum reflect the views of the authors and do not constitute official policy of the AMA. Posted May 3, 2004.

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Scenario: How do you decide whether to send written condolences after a patient's death? If you do send one, what should be included?

Reply: It is a common misconception that a physician's care of a patient ends with the patient's death. Although physicians extensively document patients' medical and social information, they infrequently write even a short condolence note to a patient's bereaved family. (Family in this context also refers to significant nonrelated others.) The physician who plays a pivotal role in chronic or acute terminal care of a deceased patient should consider extending a written expression of sympathy to the grieving family, even if he or she interacted with the family for only a few hours in the trauma bay of the emergency department.

In a study at our medical center published in 2002 in the Journal of Palliative Medicine, 40% of responding physicians had some written contact with the family after a patient death; only 20% of physicians made this contact for more than half of their deceased patients. Physician reluctance to write to the family could derive, in part, from a perceived personal failure, but another and perhaps more influential factor is the physician's discomfort with not knowing what to say.

There is a paucity of information on the import of physician contact with the patient's family following the patient's death; however, conventional wisdom supports the use of condolence offerings.

Sympathy notes can memorialize the deceased and provide comfort to recipient and sender alike. They further humanize the patient-physician interaction.

It is acceptable to mention that someone has died without using euphemisms such as "passing" and "going to a better place." I recommend that condolence notes mention the deceased by name with an acknowledgement of the family's loss and an expression of sympathy. Whenever possible, the note should highlight unique positive qualities of the deceased person, perhaps with a short anecdote describing a patient-physician or other memorable interaction. Some phrases can be helpful in expressing concern for the bereaved: "Although I never met;" "I was saddened to find out about;" and "It is difficult to find words to express my sorrow." When appropriate, a comment about the superb care, love and support that family and friends provided to the patient can be described.

If the note offers assistance to the grieving, be prepared to provide it. In acute deaths especially, a meeting to review the occurrences could be of great benefit to the family and allow for closure. The note should end with a thoughtful closing such as "you are in my thoughts" or "with deepest sympathy."

Phrases that should be avoided include "I know how you feel;" "He is in a better place;" " You will do fine;" "You should be thankful that you were together for so long;" and "Time heals all wounds." These remarks can be perceived as trite, presumptive or incorrect. The physician's faith-based beliefs should not be offered as comfort unless it is clear that the recipient shares these beliefs.

Physicians should not leave a specific message on an answering machine, unless it states that you are thinking of the family and will call back or write to them. In my own practice, I will often call on the day of the death or the next day and follow this with a note. The note should be sent in a timely fashion, usually within one to two weeks of the death.

E-mail is generally a less than optimal way to contact the family unless this was previously established as a frequent mode of communication. Handwritten notes are usually perceived as warmer and less businesslike. Legible writing is mandatory and might necessitate a typed note composed by the physician. Commercially available cards need at least a brief personalized expression of sympathy and, in my opinion, are not as genuine.

Sending a condolence note also can be a beneficial act of closure for the physician. I have had many positive comments from families who have received my condolence notes. Occasionally a letter is sent to me years after the fact because something happened to remind the family of our previous encounters. Many times, a recipient of my condolence note has encountered me in a mall or store and reminded me how appreciated and helpful the note was for them.

Expressions of sympathy are important aspects of comprehensive patient care. At our hospital, this is proactively addressed with resident and staff physician educational sessions and provision of blank sympathy cards for use by all of our hospital employees.

Neil M. Ellison, MD,, director, Palliative Medicine Program, Geisinger Medical Center, Danville, Pa.

Scenario: Should family members be present during resuscitation?

In a life-threatening situation, how do you decide whether to allow a patient's loved one into the emergency department treatment area?

Reply: A 76-year-old man with end-stage heart disease arrived in the emergency department with evidence of heart failure. Despite distressing, critical shortness of breath, the patient was alert, oriented and interactive. The patient's cardiologist knew his medical history well and confirmed that no surgical or coronary intervention was possible. The patient and his wife wished for full resuscitation attempts, which were appropriate. Despite optimal management, the patient's condition steadily deteriorated. The patient, his wife and his cardiologist were all aware of the immediacy of the life threat. As resuscitative attempts proceeded, the wife remained in the room, which comforted the patient. Although the experience was frightening for the wife, it was important to her; she wanted to be there. The doctors and nurses were able to apply oxygen, initiate the intravenous lines, perform ECGs, draw blood tests and administer medicines with the wife present. In fact, the wife's presence facilitated the information flow and the discussion and allowed the patient and his wife to be better informed of the situation. The wife stood near the doorway and did not interfere with the intensive medical interventions.

At times of life-threatening crisis, the traditional practice has been that the patient and family should be separated. There are some good reasons for this separation. The goal is to optimize resuscitation attempts, so disruptive families, hostile and aggressive outbursts, traumatizing experiences, and fainting episodes must be avoided. The experience can easily create posttraumatic stress. The physical and psychological safety of families is not the physicians' primary concern at these moments and might not be easily managed when all effort is on resuscitation and caregiving. In addition, the physicians and nurses must not be hampered by performance anxiety, nor should they be distracted from high-priority tasks by the presence of family.

Nevertheless, routine exclusion of families from resuscitation maneuvers is unwarranted. In fact, rational, controlled and carefully considered family presence should be encouraged as much as possible. Under supportive circumstances with rational boundaries, family presence can make a meaningful and positive difference. Done well, families and caregivers alike can benefit.

One of the first considerations in a rational plan must be patient privacy. Under most circumstances, patients desire privacy. Personal discussions and sensitive physical examinations require an unimpeded patient-doctor relationship. A third party can be welcomed only if the patient requests the presence of another person. Physicians should never assume that the patient is comfortable with a third-party presence and should ask the patient in private whether he or she wishes to have the companion present during the history and physical. This necessitates a brief separation of the patient and companion to clarify the patient's wishes. These usual guidelines are not always easy to follow in times of crisis.

In the case above, the wife had arrived separately from the ambulance that transported her husband. When she arrived, she was greeted at the intake desk of the emergency department. The nurse at the triage desk escorted her to the hallway outside of the care room, and the nurse conferred with the treating doctor and nurse. The wife was brought to the doorway so the caregivers could speak to both the patient and the wife. The patient was happy to see his wife. She did not interfere with his medical care even as she stood at the gurney holding her husband's hand. The patient's condition worsened; the wife and doctor stepped outside of the room, where they discussed that his heart and lungs were failing, and he might not survive. As they stepped back into the room, it was clear that endotracheal intubation was required. The patient turned to his wife and said, "Give me a kiss, I am not going to make it."

The wife and husband kissed, three times. They expressed their love, and the wife, crying, was asked only to step outside the room; respiratory therapy and other assistants had to get in. The intubation went quickly and smoothly, so the wife was brought in from the hallway. The patient's condition continued to deteriorate; he went into cardiac arrest and, despite full ACLS maneuvers, was pronounced dead. The wife was either inside the room or immediately outside in the hallway during the entire course. She hugged the doctors and nurses and, crying, thanked them for their wonderful care.

Managed well, the presence of family during life-threatening circumstances can be beneficial to all. While separation is clearly required during specific tasks and under special circumstances, the separation should be as short as possible. When the family will be physically and psychologically safe, will not interfere with care and can be supported, the presence should be encouraged.

James G. Adams, MD, professor, Northwestern University; chief, Division of Emergency Medicine, Feinberg School of Medicine, Northwestern Memorial Hospital, Chicago

The Ethics Group provides discussions on questions of ethics and professionalism in medical practice. Readers are encouraged to submit questions and comments to [email protected], or to Ethics Group, AMA, 515 N. State St., Chicago, IL 60654. Opinions in Ethics Forum reflect the views of the authors and do not constitute official policy of the AMA.

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