Improving the System and Making a Difference

9 Improving the System and Making 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 eager 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.

As a young physician, I spent most of my time doing direct patient care and some research. Later, I took on more administrative duties—an occupational hazard, especially in academic medicine. Eventually, I took over administration of our health care system’s nursing home and home care divisions, in addition to my work in hospice and palliative care. I regret spending less time in direct patient care, but I saw this as an opportunity to extend the philosophy and practice of palliative care beyond traditional venues. I had come to appreciate the importance of systemic change as a means of promoting healing.

There is a popular story in hospice lore—perhaps you’ve heard of it—about starfish. After a large storm thousands of starfish washed up on a beach. One person walked along the shore, tossing starfish back into the surf. Another person came up and said cynically, “Look at all these starfish. You can’t possibly make a difference.” Without missing a beat, the first person tossed another starfish and said, “Made a difference to that starfish!” This story is typically told to highlight the importance of doing good one by one. This is undoubtedly true. However, I’ve also thought there was a grain of truth in what the second person said. Might it not have been a good idea to run back to town, recruit some allies, and organize a collective effort for such a huge task?

This book is intended for clinicians interested in improving their knowledge and skills in palliative care and perhaps becoming specialists. If that applies to you, congratulations and welcome to the club. It is a wonderful and rewarding field in which to work. I am forever grateful to have found my way here. However, we need to be clear-eyed in facing a somewhat painful truth: Palliative care and related fields like geriatrics do not yet enjoy the same level of respect as more established specialties. In fact, one could say we are a relative underclass. The reasons for this are complex, but at its heart I think it is because we don’t fit into the “cult of cure” paradigm. The fact that people still age, become chronically ill, and eventually die is evidence of the failings of a too narrowly constructed medical mindset. That we are needed is in-your-face evidence of this failure, giving rise to a subtle and at times not-so-subtle bias. While some progress has been made—most people acknowledge the need for palliative care and are even grateful for its presence—this bias is systemic and hardwired into the very structure of modern health care, from methods of reimbursement to organizational hierarchy and structure. Like most intrinsic bias this works largely out of consciousness, but that does not make it any less real. To those considering a career in palliative care, wonderful as it is, a warning: You will encounter this bias, if you have not already. There is little choice, I think, but to meet it head on.

To keep tossing individual starfish or to organize a collective effort? There is no right answer, but I believe all working in palliative care will be more effective and probably happier if they become more skilled in in working and improving the system.

In medical school we were taught that becoming a good doctor required learning a lot and being skilled in clinical practice. This emphasis continues into residency, but over time physicians develop reputations for their skills in working the system. The resident who knows how best to expedite a certain test or procedure, or facilitate a desired transfer, is highly respected. The problem is that the system these residents become skilled in working is often limited to the immediate venue in which they work. If we consider what the relevant “system” is for chronically ill and dying patients, we can see how restricted this world view is. Home care, nursing home care, and community support, all critical system elements, are largely ignored in medical curricula or, at best, given token acknowledgment. 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 and improving the system to include patients’ entire universes, they will be will be that much more 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 physicians’ 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. 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. 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 for the benefit of their patients.

Given all this, it is a wonder that positive change in the system happens at all. Fortunately, there are always a small number of people who understand the great importance of improving the system. Although Cicely Saunders was right in suggesting that we should set lofty goals for ourselves, I am sure she would agree that one does not have to become the president in order to make a significant contribution. This book is written for the serious student of palliative care. Clinicians who find their way to palliative care are highly motivated to be of help to patients and families. They cannot help but become aware of how flawed the current health care system is. Here I am suggesting that simply becoming clinically competent in the provision of palliative care, important as this may be, is an inadequate response to the suffering around us. Each of us, regardless of our position, must work to change the system for the better.

Palliative Care Note

In your plan for self-directed learning, include a section on how to improve the system.

In becoming professionals, we all need to develop a plan. Typically, our plans involve degrees, additional training, and experience—the types of things that you list on a CV or résumé. That is fine and necessary. But what do you need to learn that will not go on a CV, as relates to the system within which you work?

One of my jobs as a more senior physician is coaching palliative care fellows, young attending physicians, and other clinicians new to their respective roles. Most have done a superb job honing their clinical skills and they have thought hard about what they need to put on their CVs. The greatest area of neglect I have noticed relates to their understanding of the systems within which they work.

By way of example, the Department of Veterans Affairs, where I have worked for the past 30 years, is a huge, complex bureaucracy. Our chain of command extends from the bedside all the way to the President. Like any large bureaucracy, it has complex rules and regulations. It also maintains astoundingly detailed databases regarding both clinical and administrative aspects of work. Most clinicians new to the VA are superb clinicians. However, few take the time to try to really understand the new system within which they work. A better understanding of the system is the first step in being able to work and improve that system. In such a vast system nobody can master it all. The trick is to figure out what parts of the system are most relevant to you. Below, I list some important (and often neglected) topics to consider with some questions specific to palliative care: