For more than forty years, Americans have demonstrated the desire to not only discuss but also take control of how they die. Advanced Directives originated in the late 1960s when patients and families challenged doctors, nurses, and judges the right to continue futile life support for themselves and loved ones, winning the right to decide. At the same time, Cicely Saunders introduced hospice care to Yale University. In 1997, Oregon became the first state to legalize physician-assisted suicide, with Washington quickly following.
Why is admission to palliative and hospice care, for many patients, delayed until days before death? Why do terminal cancer patients still die in the ICU or hospital? After years of fighting to win the right to decide, has the public changed its mind?
No, it hasn't. The American public is waiting for oncology care providers to catch up. Medscape (password required) describes five reasons end of life discussions are avoided. They are:
- Patients get depressed
- The truth kills hope
- Hospice or palliative care reduces survival
- This talk is not culturally appropriate
- Prognosis is unknowable
However, these reasons are not supported by real patient data.
Nurses struggle, too. It's not easy to discuss death when a patient is looking at you, his eyes expressing both hope and sadness. I've been an oncology nurse for over ten years and am nationally certified, and still, I'm not very good at it. It's not completely my fault. I've attended mandatory hospital in-services on the subject of customer service, but never a mandatory in-service on how to talk to my patients about their deaths.
The little I know about talking to cancer patients about dying, I learned through osmosis: studying a nurse colleague who is especially good at it. This important aspect of oncology care deserves more than a hit-or-miss education.
The communication skills used for discussing dying with patients should be required for members of the cancer care team. These skills would be assessed and taught during orientation to oncology units with the same importance as safe chemotherapy administration and managing vascular access devices. Oncology certification should include the skills. Perhaps recertification should be required every two years, like a CPR card.
More and more, cancer is managed as a chronic rather than acute disease. This changing paradigm calls for a new approach to the psychosocial needs of cancer patients, and, additionally, another set of skills to ensure best-practice. It presents an opportunity for collaboration among oncologists, nurses, social workers, and chaplains to create a care provider curriculum and national standard for conducting end-of-life discussions, ensuring that team members support patients with the same quality information.
Do you think education in end-of-life discussions with patients would be helpful and useful? What are your suggestions?