Could a Doula Help Cancer Patients?

Cancer is a life-changing event. Is enough support available to navigate it?

Posted Dec 07, 2018

A well-known and much-liked resident in our neighborhood was recently diagnosed with an advanced stage of cancer. Even though she was getting chemotherapy and pain medications were relieving her of the unrelenting pain that caused her to seek medical help, it was acknowledged by her and everyone who knew her that, “...It was just a matter of time...” before the cancer would win. But she is making it emotionally easy for everyone to visit or talk with her on the phone because she seems to be the same funny, clever, upbeat person she has always been. Having cancer didn’t seem to change her at all and friends, perhaps relieved that they didn’t have to discuss with her the impact of her diagnosis on her life, may have offered less emotional support than they should have given. This was obvious when, a few days ago, she said something indicating that life with this aggressive cancer was (of course) having an impact on her emotional well-being.

“I don’t really mind going to chemotherapy,” she remarked, “because I get to talk to other cancer patients, hear their stories, and it makes me comfortable to be around them. They understand what I am going through and are very supportive.” What was left unsaid was that on some level those going through similar treatment, instead of her close family and friends, better met her emotional needs. We, she implied, could not really understand how she was feeling.

Her need for more emotional support than we were giving her resonated when a news release about suicide and cancer appeared on various websites several days ago. An article published in the Journal of the American Medical Association online examined the rate of suicide among newly diagnosed cancer patients in England.

The authors looked at the medical records of almost 5 million patients and found that cancer patients tended to have a significantly higher rate of clinical depression and suicide than seen in the general population. Suicides were especially high during the early weeks after diagnosis, particularly among certain hard to treat cancers such as mesothelioma, pancreatic, lung, esophageal, and stomach cancers.

The authors of this study suggest increasing psychological support, and indeed our friend saw a psychologist at the recommendation of her oncologist within days of getting her diagnosis. The therapist, concerned by her rapid weight loss, recommended an antidepressant known to increase appetite but did not talk to her about how she was dealing with her diagnosis, nor suggest future meetings to support her during the chemotherapy and beyond.

That the rate of suicide is so high during the first weeks after patients learn they have cancer does not seem too surprising. This is a time when the patient and his or her family and friends are extremely vulnerable. And although oncology departments are competent to schedule the tests, consultations, recommended course of treatment, medications, and even appointments at a hospital-based wig store, most do not have on their staff someone trained to help the patient and family navigate the journey from treatment to recovery, remission or, sadly, death. These departments do not offer what many obstetrical departments offer: a doula, a person who is trained to help a patient go through an unknown, life-changing experience.

As anyone who has had cancer knows, there was a “before” and now there is an “after.” Often the treatment, even when thoroughly successful, causes permanent side effects from loss of taste to a decrement in cognitive function. Moreover, cancer treatment does not stop the demands of life. Bills have to be paid, work, if possible, continued, children to be cared for, elderly parents to be worried about, and often, end of life decisions need to be made.

There is no rehearsal for any of this.

A network of family and friends can be quickly organized to provide meals, rides to the hospital, care of children and the house, and picking up prescriptions at the drugstore. But sometimes it is necessary to have someone who knows what to do when the unanticipated happens, like a side effect that causes hospitalization, or how to maneuver one’s way out of the labyrinth of bills, where to order medical equipment for the home, or how to make out a will. If these problems are overwhelming to someone who is healthy, imagine how difficult they will be for the patient.

Training people to become a doula for cancer patients may solve these problems. Doulas have long been used by pregnant women. Their job definition, according to the dictionary, is a non-medical person, usually a woman, who acts as a birth coach assisting the pregnant woman before, during, and after she gives birth. The doula may also support the woman’s partner and family during these months of pregnancy and after the birth.

Oncology departments could train people to take on a similar role for the cancer patient. Such a person would be available at the outset when the diagnosis is learned and available until no longer needed. If possible, a doula could work with the family and friends to help them better understand how to help, emotionally as well as logistically, the needs of the cancer patient. And just important, the doula would be available, if the patient wishes, when he or she is facing the semi-annual assessments of whether the cancer has returned.

Despite the almost weekly reports of new successful treatments for cancer, this disease in its many manifestations is still with us. And so, too, is the need to help the patient get through this illness without suffering from additional emotional pain. Until one has been through the cancer, as a patient, family member, or friend, how to help and support most effectively often has to be learned. Perhaps a doula could be there to teach us how.

References

“Risk of Suicide After Cancer Diagnosis in England,” Henson K, Brock R, Charnock, J et al JAMA Psychiatry online Nov 21 2018.