Test your knowledge on...
Early in my career I was asked to see a young woman with advanced hematologic cancer who’d come from another province for a bone marrow transplantation, a procedure that was quite new at that time. Seanna had been diagnosed in the middle of her second year of university and had quickly run through the available treatment options with no success. The bone marrow transplant was her last chance. I was not sure what to expect; nor, I suspect, was she when we first met. She was lively, agitated, friendly, frightened and overwhelmed. In our first meeting we spoke first of the medical details of what was to come. We clarified her questions — some I could help with, some she had to take to her oncologist. I learned a bit about her life before cancer. The enormity of what had happened to her hung in the air between us.
In our second meeting Seanna spoke of some physical problems she was having. She became solemn and said she didn’t want to die and that she dreaded the pain it would inflict on her parents. We sat in silence for a few moments, both moved by the enormity of what she was feeling. She then talked about her boyfriend and returned to thoughts about her possible death. She did not come to her next appointment. I learned she’d had the procedure and flown home with her mother as soon as possible. Sadly, I heard from the medical team that Seanna had died about 9 months later. I later received a note from her heartbroken mother thanking me for the time I’d spent with her daughter. To my surprise, she said Seanna had found our two talks very important and had spoken of having found some clarity about her feelings through them. It was a lesson in how a brief interaction could have meaningful impact.
Patients with advanced cancer face complex physical, emotional and existential challenges. While those clearly at the end of life seek to face death with comfort, dignity and meaning, those who have a longer time for survival must deal with those issues while also remaining engaged in life, dealing with a complex healthcare system, making treatment decisions that have profound implications and managing relationships that have gone through tremendous changes. Psycho-oncologist Gary Rodin at the Princess Margaret Hospital in Toronto has called this state “double-awareness” and he suggests that the demands of it can lead to states of depression and demoralization. (Rodin G, Zimmerman C. Psychoanalytic Reflections on mortality: A reconsideration. J of the Am Academy of Psychoanalysis and Dynamic Psychiatry 2008;36[1]:181-96).
Individualized therapy
Now Dr. Rodin and coworkers at Princess Margaret Hospital have just published preliminary work on a brief, manualized individual psychotherapy they’ve developed that’s designed to meet the particular needs of people with advanced cancer. (Nissim R et al. Managing cancer and living, meaningfully (CALM): A qualitative study of a brief individual therapy for individuals with advanced cancer. Palliative Medicine, 2011 in press). The treatment is known as Managing Cancer and Living Meaningfully (CALM). CALM consists of 3-6 individual sessions each lasting 45-60 minutes delivered over the course of 3 months. Participation of the primary caregiver in one of the sessions is encouraged. The sessions cover 4 main areas:
- symptom management and communication with healthcare providers
- changes in self and relations to close others
- sense of meaning or purpose
- issues around advance care planning and end of life.
Other researchers have found these to be common areas of concern and sources of distress for this population. The sessions are semi-structured. They aim to cover these areas, but the focus given and time spent on each area varies with the needs of each individual. Initial sessions were face-to-face to establish rapport, but subsequent sessions could be conducted by telephone.
This preliminary study consisted of 10 patients who agreed to participate in the treatment and follow-up study. They all had a diagnosis of advanced cancer (including lung, sarcoma, Hodgkin’s lymphoma, breast, ovarian, prostate, cervical and brain) with a life expectancy greater than 6 months. They were referred for concerns with anxiety, depression and difficulty coping. Patients were given a qualitative interview after completing 3-6 CALM sessions.
In the follow-up interview there were no identified risks to the treatment; the patients identified five common benefits from the intervention:
- Patients appreciated having a “safe place” where they could talk with a trained health professional about the experience of having advanced cancer and the urgent need for reflection and re-evaluation it brings. They all talked about the difficulty they’d had when trying to discuss these things with family and close friends. Several spoke of the need to “vent” in what they felt was a safe environment. Being able to validate and normalize some of their feelings brought several subjects a sense of peace and increased ability to cope.
- CALM sessions were for many the only place they felt they could talk about death and dying, in part because it was “part of the agenda.” Allowing this topic to emerge was felt to bring a huge relief to the participants.
- The therapists all had cancer-related expertise that allowed them to assist participants in navigating the healthcare system and managing their illness; advice about common drug side effects, for example, was helpful in one case and also served to deepen the bond with the therapist.
- Many people reported difficulties in relationships with family and close friends. These individuals were often also disrupted by the illness and its implications and the CALM sessions helped them understand and deal with the reactions of others to their diagnosis.
- Subjects valued the opportunity to be “seen as a whole person” by the therapists after having experienced so much fragmentation of their care with subspecialized doctors who did not always communicate, leading to a feeling of being seen as a set of problems but not as an integrated person.
Venting, peace and growth
The CALM experience was both practical and profound for the participants, who appreciated the support it provided in addressing the complex and distressing issues that follow in the wake of the illness and its treatment. They said that the opportunity to speak freely gave emotional relief, increased their understanding of their own thoughts and feelings, and even promoted a sense of peace and personal growth. Key features of CALM seemed to be empathy, pacing determined by the patient, emotional meaning of practical support and inquiry into concern about death and dying.
The researchers are now engaged in a larger, randomized controlled trial of CALM to test its effectiveness. This pilot study emphasizes the importance of empathy, flexibility combined with practical help and a willingness to talk about painful subjects in helping people with advanced cancer. It holds the hope of development of a brief model of intervention that, if successful, can be taught and disseminated to many therapists and other healthcare providers who can use the framework to guide their interactions. And finally, it seems to suggest, perhaps as did my experience with Seanna, that a little intervention can go a long way in bringing hope and help to those suffering with terminal cancer.
