Respecting Choices of Patients Awaiting Stem Cell Transplant

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By François Pouliot, Ph.D., M.D., assistant professor and clinical ethicist, Department of Critical Care

JNeumann.jpgJoyce Neumann, program director in the Department of Stem Cell Transplantation and Cellular Therapy at MD Anderson, recently was involved in a quality improvement project related to advance directives for patients awaiting a stem cell transplant. Here, she answers questions about this important topic. 

What's involved in a stem cell transplant?
Many malignancies of the blood (leukemia, myeloma and lymphoma) and some solid organs (ovarian, breast, testicular germ cell) can be cured or better controlled if cancer cells can be destroyed with very high-dose chemotherapy and/or radiation. For many patients, this is their last option for treatment because standard therapy has failed to effectively treat their disease. However, blood-forming (the hematopoietic) cells are also destroyed due to treatment, and we need to infuse stem cells from a person (collected from the patient previously or someone else) or from cord blood cells that have the potential to regenerate lost blood-forming cells. Although this treatment has become much safer over the last 30 years, it is a high-risk procedure because one can become very sick and sometimes die of complications like infections, graft vs. host disease (which happens in stem cell transplants from a different person) and relapse disease.

Why intervene in the process?

Many people have strong willpower to get through this kind of treatment. Our general approach is to use all available treatments, including artificial life support, if we think there is a realistic chance for recovery. In situations where recovery is not possible (which our experience tells us), heroic measures such as breathing machines, cardiac resuscitation or invasive procedures will not be used.

Because many patients are so hopeful and desperate for cure, they may not be mentally or emotionally prepared to think or talk about the possibility of life-threatening complications and poor outcomes such as death. We think that giving accurate information and the opportunity to formally express their wishes is important. Advance directives allow patients to express their wishes of medical treatment before care.

There are three kinds of advance directives in Texas:

  • The Medical Power of Attorney, by which you appoint someone you know and trust to be your agent. Your agent can make health care decisions for you if you are unable to make them for yourself.
  • The Living Will helps you communicate your wishes about your medical care. This Living Will takes effect only when you are in the terminal phase of illness or injury.
  • The Out-of-Hospital Do-Not-Resuscitate Order is an order signed by a doctor. This form allows the patient to refuse life-sustaining treatments when outside the hospital.

What was the goal of the intervention?

Our goal was to increase the number of advance directive documents and/or advance care planning conversations by 10% between March 1 and April 9 of this year.

Can you tell us more about the team members?

From a multidisciplinary institutional task force (Respecting Choices), a team was formed to look specifically at this. This team had diverse backgrounds and competencies. Lakshmi Naik (Social Work) was our team leader, Daniel Epner, M.D., (General Oncology), Colleen Gallagher, Ph.D., (Ethics) and myself made up the core team, and Ellen Siegel (Process Improvement) was our facilitator. I have been an advanced practice nurse and program director in Stem Cell Transplantation (SCT) for 18 years and an adjuvant ethicist in the Section of Integrated Ethics for six years, and increasing patient-practitioner (doctor, nurse, social worker) communication about this subject is something many of us have been striving to achieve for some time. We have had the support of our department chairman, Richard Champlin, M.D., and the wonderful nurses and faculty working in SCT. Our sponsors were Susan Gaeta, M.D. (Critical Care) and Margaret Meyer (Social Work).

How was the intervention done?

We used an existing 45-minute admission class taught by the SCT nurses to patients who were soon to be admitted for treatment, and added content and discussion about this topic with an advanced practice nurse or selected nurses. A previously written but not implemented document, "Advance Care Planning Before Your Stem Cell Transplantation," was presented to the patient and their caregivers. The topics addressed in this document included:

  • Stem cell transplant-related risks: relapse, graft failure, infection, graft vs. host disease, respiratory and multiple organ failure.
  • Encouragement to complete advance directives with discussion with family and the health care team.
  • Transition of goal of care.

Questions and concerns were welcomed in a group discussion.  

What were the results of the intervention?
We looked at 32 clinical records before intervention and 35 after intervention. We noticed an increase in the number of conversations regarding advance care planning (from 72% to 89%), the number of conversations addressing patient values and preferences (from 9% to 14%), and the number of advance directive documents found in medical records (from 37% to 40%). The intervention was deemed helpful.

What should be done in the coming months?
We recognize there were several limitations to this intervention, such as the short time-frame we used to see change, lack of documentation even if conversations occurred, and others.  We will continue classes, collect more data over six months, and modify or revamp the intervention if needed.

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