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Palliative Care Perspectives : Chapter 9: Working the System and Making a Difference : One Person Can Make A Difference

We must become the change we want to see

Mahatma Gandhi, 1869-1948

A medical student with whom I had worked went to study palliative care in London. During her stay she was fortunate enough to meet Dame Cicely Saunders, founder of the modern hospice movement. She returned from her studies and was anxious to tell me of her visit with Dr. Saunders. "We spoke of various issues and problems in palliative care in the United States - insurance, the Medicare Hospice Benefit, medical education, and the like. Dr. Saunders said to me, 'Well, why don't you change things?' Exasperated, I replied, 'What do you want me to do, Dr. Saunders, become the president of the United States?' Dr. Saunders quickly replied, 'Why, that would be a lovely idea!' Dr. Hallenbeck, she really suggested that I become the president!"

This story tells us something about the legacy Dr. Saunders leaves for us. The modern hospice and palliative care movement became a reality because Dr. Saunders and her successors identified problems and then set out to solve them. The student who met with Dr. Saunders had emigrated from Vietnam as a child refugee. She was a third-year medical student at the time of their meeting. Given our country's history, it borders on the absurd to think she might become president - but it did not so seem to Cicely Saunders. The message Dr. Saunders delivered to a visiting student and to the rest of us is to appreciate our potential to effect change regardless of our current stations in life and to encourage us to act on that potential.

When I think about all the problems in modern health care, I tend to become depressed, angry, and discouraged. As one comes to understand the magnitude of change that will be required to deliver truly excellent palliative and end-of-life care for patients, it is easy to become overwhelmed, to give up and wait for others to act. It is true that major changes must occur in the underlying structures of how care is delivered and reimbursed. It is also true that our society has a long way to go in coming to grips with serious illness and how we die. Educational deficiencies abound for health care professionals and the lay public. It is tempting to think, "Perhaps someone smarter, more energetic, or more powerful than I will be able to solve these problems." Perhaps this will happen, but then again, perhaps not. Maybe it is up to us to make a difference.2,3

When I attend on the general medical wards in our hospital, on the first day I have begun asking the team members, resident, interns, and medical students why they decided to go into medicine. They tend to speak of the great intellectual challenges involved in diagnosis, treatment, and research, yet behind these words one can hear that virtually all are driven by a simple desire to be of help to others. When I reflect this observation back to them, they nod sheepishly in agreement. I suggest that when they find themselves getting angry at others or frustrated during the month, they consider that other people are also doing this work because they, too, wish to be of help. I am encouraged that this underlying spirit of helpfulness lives on, often despite an otherwise dehumanizing medical system. If we can tap into this spirit, then there is hope.

During such attending months I am amazed at the inventiveness of the teams in "working the system." Residents take great pride in knowing exactly who to talk with in order to expedite a certain test or procedure. An ability and willingness to work the system can have a major impact on patient health care outcomes. The problem is that the extent of the system clinicians are so skilled in working is largely restricted to the inpatient hospital and to a lesser degree outpatient clinics. If we consider what the relevant "system" is for seriously ill and dying patients, we can see how restricted this clinician universe is. Home care, nursing home care, and community support, all critical system elements, are largely ignored in medical curricula or, at best, given token acknowledgement. For too many hospital based clinicians, when patients and families leave the grounds of the hospital, they are on their own, sucked through a black hole into some parallel, very alien universe from which they occasionally and mysteriously reappear in emergency rooms. To the extent clinicians can expand the scope of their concern and interest in working the system to include patients' entire universes, they can significantly improve their ability to be helpful.

Even within the hospital setting, the efforts of house staff are too often restricted to getting around the system rather than changing the system for the better. While their motivations for going into medicine may have been noble, the grinding work of residency training forces them to focus as much on their own survival as on excellent care for their patients.4 Getting patients the care they need melds with an overpowering drive to expedite the processing of patients so the "service" does not become overloaded. It almost seems too much to ask trainees who are struggling with survival and the care of individual patients to broaden their scope and consider changing the system itself. Somewhat paradoxically, in order to empower house staff and other clinicians to change the system for the better for their patients, we must improve the system for clinicians as well. To the extent clinicians can rise above "survival mode," they may find the needed energy for changing the system on behalf of their patients.

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Palliative Care Perspectives

James L. Hallenbeck, M.D.

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Copyright 2003 by Oxford University Press, Inc.

The online version of this book is used with permission of the publisher and author on web sites affiliated with the Inter-Institutional Collaborating Network on End-of-life Care (IICN), sponsored by Growth House, Inc.