Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

Reinterpreting Comprehensive Cancer Care
July-August 2002, Vol. 4, No. 4

THIS IS AN ARCHIVED DISCUSSION.

Messages:

1. Welcome Elizabeth Pitorak! by Anna Romer, 7/22/02

2. Response to Dr. Gilligan by Elizabeth Pitorak, 7/24/02
      Response to Dr. Gilligan by Timothy Gilligan, 7/30/02
         Response to Dr. Gilligan by Elizabeth Pitorak, 7/31/02

3. Response to Editorial by Dr. Smith by Elizabeth Pitorak, 7/25/02

Letters to the Editor

1. Palliative vs Curative Care by Joel Potash 8/28/02

Subject: Welcome Elizabeth Pitorak!
Topic: Reinterpreting Comprehensive Cancer Care
From: Anna Romer
Date: Monday, July 22, 2002.

Dear Readers, Please join me in welcoming Elizabeth Pitorak, former project director of Project Safe Conduct, as our online guest for the next two weeks! Please post your comments and queries for her here, and she will respond. Feel free to post comments about the other departments as well.

Anna Romer
Managing Editor
Innovations in End-of-Life Care

Dear Dr. Gilligan: I would like to commend you on your personal reflection. It is obvious you are an experienced oncologist with wisdom,knowledge and sensitivity who has developed a style of delivering bad news (prognosis)that is extremely individualized. As a practitioner of over 45 years, I frequently use the term of being capable of "getting inside of the head" of the patient. I do not mean to psychoanlyze the patient, but rather being able to anticipate the questions and concerns not being asked. As you so eloquently wrote throughout your reflection, knowing how and when to deliver the message is learned over years of practice. In this situation, I am choosing to use the literal meaning of practice. I have never had the opportunity to personally meet you, but in my eyes, your patients are privileged to have you as their oncologist. You addressed the concern regarding who should discuss end-of-life issues. Is it the oncologist who has a relationship with the patient built on hope or is it a new person (palliative care) who is not invested? I honestly had never consciously thought about this issue. May I share that synergy occurred when the Safe Conduct Team integrated into the bigger team of oncologist and patient/family. The members of the Safe Conduct Team were experts in end-of-life care and comfortable with how to have those conversations. At the first visit to the cancer center, the team was introduced to the patient/family. From that point until the patient opted for hospice level care, died or had stable disease, some member or members of the Safe Conduct Team met with the patient and/or family at all visits for therapy or physician visits. For some patients this relationship was just a few days and for others as long as two years. The delivery of bad news was jointly done by the oncologist and the Safe Conduct Team. My personal opinion is that this model is the answer. Also it appears that the ongoing contacts between the Safe Conduct Team and patient/family resulted in the development of a trusting relationship where they were prepared to have the conversation about shifting focus to end-of-life care and opting for hospice level care, the appropriate level of care for terminally ill patients at the end of life, when treatment failed. In closing, Dr. Gilligan in your final sentence you referred to "navigating an individual course with each person, one that we find together". As you probably know we chose Avery Weisman's term, safe conduct (conducting patients through a maze of perplexing treatments ....)for the reason you identified. The Safe Conduct team journeyed with the patient and family. Thank you for your personal reflection.

Elizabeth Ford Pitorak
Project Director Project Safe Conduct

Ms. Pitorak, Thank you for your response to my piece. What you describe with the Safe Conduct Team sounds similar to my experience working together with what my local hospitals call palliative care teams. What most impressed me when I first started working with these teams was the very favorable feedback I heard from patients; they were strongly appreciative of the involvement of the palliative care team. I was also impressed that this dual approach seemed to create a smoother transition from aggressive anticancer therapy to care focused on comfort. I agree very strongly with you that the patient's oncologist (or whichever physician has been most centrally responsible for the patient's care during the illness) needs to be present and involved in the delivery of bad news. I would never ask a palliative care team to tell a patient about a relapse or alarming test result; as the treating physician, I believe that it is my responsibility to announce to the patient when treatment has failed or reached its limit. It certainly can be helpful with many patients to have palliative-care experts present at such discussions, but the treating physician needs to play a leadership role. I find the palliative care team most helpful in assisting and supporting the patients as they make the uncomfortable adjustment to recognizing that they are near death; in addition to their particular skills in this regard, an abundance of caregivers at these moments can help alleviate patients' fear of abandonment. My institution has not integrated palliative care as systematically and as early on in the course of the patient's disease as you describe. I hope we are moving in that direction; it is certainly a rapidly changing area of cancer care. One issue that still needs work is how best to integrate the palliative care team into larger care team, and your model is very attractive. For us to do what you have done would require a substantial increase in palliative care resources. I also wonder about the potential for conflict between these different care providers, as it is often unclear what the best course of action is. You discuss the issue of the different perspectives that different services have, but I'm curious if your Safe Conduct Teams had any difficulties with conflict with the oncologists.

Tim Gilligan

Dr. Gilligan: In response to your question if there was ever conflict between the Safe Conduct Team and oncologist because of a difference in perspective regarding end of life care. In all honesty, I can not recall any major conflict. The oncologists do a great job of being honest from the beginning and telling the patients with Stage IIIb and IV that they have an incurable disease and then tell what they can offer for treatment. What was surprising to me was that most of the time, it was the patient pushing for more intervention when treatment was failing, not the oncologist. We did find that patients seemed to stay on clinical trials better with the support of the team. For a couple isolated oncologists, the team is assisting in reframing how bad news is delivered. For example, when treatment is failing, one oncologist uses an either or statement. We can do X treatment or "do nothing". The team reframes the statement to we can shift the focus from cure oriented to comfort oriented care where your pain and symptoms will be aggressively managed etc instead of the comment "do nothing".

Elizabeth Ford Pitorak

Subject: Response to editorial by Dr. Smith
Topic: Reinterpreting Comprehensive Cancer Care
From: Elizabeth Pitorak
Date: Thursday, July 25, 2002.

Dr. Smith: You did a superb detailed analysis of Project Safe Conduct from you perspective. Anytime research is done, there will always be Monday morning quarterbacking taking place by those directly involved and those viewing from the outside. We too would like to have the answers to many questions you pose. The reality is that the RFP for the Promoting Excellence in EOL Grant from the Robert Wood Johnson Foundation was specifically for a demonstration project not a randomized controlled trial. Thus,the rationale for the demonstration project. You pose the question if the program added value at a reasonable cost. I feel compelled to respond to this as the figures you used are inflated and inaccurate from my perspective. I respect that it would be very difficult to look at the budget for Project Safe Conduct and fully understand the role of the listed personnel. I also acknowledge that the team is an added cost to any budget; however, I want accurate figures for the readers to draw their own conclusions. The question is, "What would be the added cost to an operating budget if a Safe Conduct Team (advanced practice nurse, social worker and spiritual care counselor) was implemented in a Cancer Center?" In the Greater Cleveland area, the annual total salaries for the 3 member team would be approximately $145,000 to $150,000 at maximum. In clinical practice if a psychologist or pain specialist sees a patient in consultation, that is a billable service. The second advanced practice nurse functioned in the role of a research nurse who consented patients and administered all the tools to measure outcomes. The reality is that $400,000/yr. is an extremely inflated amount for the duplication of the intervention of a Safe Conduct Team. There are costs related to doing a demonstration project that would not be part of duplicating the model. We are passing on the lessons learned that do not have to be duplicated. Also the salaries quoted in the editorial are much higher than the average salary for the various disciplines in our region. May I shift the focus from cost to appropriate level of care. Throughout medical history accepted standards of care evolve over time. In the late 1950's, as a young nurse I witnessed a patient on a general medical surgical floor having a cardiac arrest. A physician opened the chest with a scalpel and hand massaged the heart as CPR, as we know it today, did not exist. Patients who had myocardial infarctions were admitted to a general medical surgical floor and had lengths of stay up to one month in many cases. During the 1960's CPR came about and coronary care units became the standard of care.Thanks to the Robert Wood Johnson we now have a 911 system nation wide. Today if any adult complains of the slightest chest discomfort, 911 is enacted and should the person have a myocardial infarction they are immediately transferred to the CCU as that is the standard of care. So, you are probably asking, "What does that have to do with hospice?" I am impatiently waiting for the day when hospice level of care is the standard of care for terminally ill patients. I have never heard a patient say that they were referred too early. To the contrary, patients/families repeatedly say that they wish they had known about hospice earlier. Late referrals with the associated financial impact on the hospice budget is a secondary concern. The primary issue is that hospice level care is the appropriate level of care for terminally ill patients and should be the standard. My question is when will hospice have a "911 that will be an automatic trigger for hospice at a more appropriate time and not 3 days before dying. It is true that not all the data is analyzed, but since the time when Dr. Smith read the project we have additional information regarding quality of life. In lung cancer patients, function declines rapidly, but we were able to stabilize factors of psychosocial wellness; specifically two dimensions of the Missoula-Vitas Quality of Life Index were stable or slightly improved in spite of declining functional capacity. Those two dimensions were the general sense of well-being and the interpersonal. An interesting discovery from the data is that two demographic subsets have been identified as having a significant reduction in overall quality of life score: People who are separated or divorced and the category of those who are diagnosed with small cell lung cancer. We want to learn more about these two groups to have a planned intervention. As an outcome to this project, my counterpart at the Ireland Cancer Center obtained a R21 grant from NIH. We will be doing a randomized controlled trial of patients measuring the effect of spiritual counseling on quality of life. There will be a second Safe Conduct Team working with a different population, advanced gastrointestinal malignancies, and a different group of oncologists. In one arm of the study the complete Safe Conduct Team (advanced practice nurse, social worker and spiritual care counselor) will work with the patient/family and in the other arm only the nurse and social worker. In closing, thank you Dr. Smith for writing a very thought provoking editorial about Project Safe Conduct. Your points merit consideration not only from us, Project Safe Conduct, but from the health care world involved in EOL care.

Elizabeth Ford Pitorak
Project Director Project Safe Conduct

LETTERS TO THE EDITOR

Subject: Palliative vs Curative Care
Topic: Letters to the Editor
From: Joel Potash
Date: Wednesday, August 28, 2002 09:48 PM

Thomas Smith ih his editorial seems to imply that patients have to give up their erythropoieten, implanted pumps, transfusions and nausea meds when they enter Hospice. The hospice I worked with and others I know WILL use indicated treatment, IF they can accomplish goals which improve patients comfort, function and quality of life. An intrathecal pump can be cost effective if the patient is expected to live a number of months, but it should not be implanted in the face of imminent death.Strontium 89 can work wonders and be cost effective, if the patient lives long enough to benefit. A transfusion can restore some function to a patient, but it should not be used to maintain a hemoglobin value or if it does not work to give additional strength, or prevent angina, or whatever the established goal. One ought not go directly to Zofran if less expenssive medicines can control nausea. It appears that some of us are ennamored of the newest, the most technological, or the most recently detailed.If something doesn't work, or if a drug is more expensive but not much more effective, we should have no qualms about refusing then treatment or offering an equivalent but less costly treatment.It is not fair of patients to demand or doctors to offer cadillacs if Hondas work just as well.

Joel Potash MD
Center for Bioethics and Humanities
Upstate Medical School Syracuse, New York