Communication at the End of Life

Figure 1.

Lidia Schapira, MD

Experienced oncologists know that good communication is therapeutic for patients and families and is a fundamental ingredient of what we have come to appreciate as ‘quality care.’ Seriously ill patients and their loved ones have repeatedly identified the importance of various elements of good care such as trust in physicians, avoidance of unwanted life support, and respect for individual choices. Unfortunately, there are many examples of how physicians fall short of meeting the needs of patients and families. We are typically absent at the bedside at the time of death and may sadly be out of touch with the family if end-of-life care is delivered in the home, at a chronic care hospital, or at an inpatient hospice. In some cases, we may be unaware that a patient died and wonder why he or she did not show up for a routine appointment. The causes are not mysterious: a simple miscommunication between the nurses working in the community, the primary care physician, and multiple specialists, or an incomplete sign-out after a planned absence from the office.

Once we learn that a patient has died, how can we reach out to family members and loved ones and express our sadness and respect for their loss? Whenever possible, I prefer to call the person with whom I had the closest rapport to listen to him or her relate the circumstances of his or her loved one's death, go over any lingering doubts or concerns about treatment or the illness itself, and then reminisce about times spent together.

A written letter of condolence is also an excellent way of conveying respect and support for the family. There are a number of good sample letters in the medical literature in prestigious journals, and templates are available on many Web sites.¹ A thoughtful condolence letter offers tribute to the person who died and also provides comfort to mourners in their time of loss. Specific guidelines for writing a condolence letter include the following: acknowledge the loss and name the deceased, express your sympathy, note special qualities or a personal memory of the deceased, praise the bereaved for their strength or exceptional qualities exhibited during the illness, offer to remain available for support or to review the management of the disease, and end with an expression of sympathy. If there is simply not enough to say for a formal condolence letter, then a short sympathy note may suffice. In our practice, we routinely send a sympathy card signed by the entire team.

The death of a patient may let loose a torrent of grief in other clinicians and members of the multidisciplinary team. It is also important to keep in mind that repeated losses affect office clerical workers and support staff. Medical assistants often have meaningful and deeply personal relationships with our patients. Schedulers and secretaries may be used to giving support over the phone to relatives who call to make or cancel appointments, and face-to-face pep talks and encouragement to those who accompany patients to office visits and treatments. Office meetings, inclusive of nonprofessional staff, are useful ways to build a sense of community and common purpose. Yearly commemorative services or gatherings during which all patients who died the previous year are remembered and named may be comforting and help us mourn our individual and shared losses.

Some of my favorite professional memories are those of home visits. In the bedroom or kitchen, I witnessed the love and caring of devoted relatives and joined their efforts to preserve comfort and dignity as death approached. I continue to encourage our trainees to venture out into the community and see how much can be accomplished with good intentions, a few medications, and an active imagination. Following death, families enrolled in hospice programs typically have access to many services that help cope with grief and loss. For others, the connection to the oncologist and his or her staff may be the only link to supportive services. We often hear from relatives that it is painful to be cut off from the medical center and the resources and relationships that helped them cope for many months or years. Knowing this, it is important to make sure we do not abandon our patients' families at a time of emotional need.

Communication matters throughout the disease trajectory. Most of us are trained to communicate the cancer diagnosis, the risks and benefits of standard therapy or experimental therapy, and when the clinical course changes. We are often not trained for communication during time of mourning. Good communication needs to be dosed and adjusted to meet the needs of the individual and family, delivered with caring intention, and followed by a promise to remain constant and present for the long haul. As we hone our professional skills in order to best meet the needs of patients and families, it is also important to recognize our personal needs for support, solace, and comfort. Repeated losses take a toll on all members of the multidisciplinary team, including nonprofessional staff. Paying attention to staff morale and the well-being of our colleagues may go a long way towards building an effective and healthy collaborative practice.