Innovation in End-of-Life Care

Changing attitudes among health care providers, better education and a more encompassing definition of the terminally ill are among the keys to helping physicians better adapt to the needs of patients who are dying, according to a Medical College of Wisconsin physician who studies innovation in end-of-life care.

"The end of life can be a very confusing time from a medical perspective," said Russell G. Robertson, MD, Medical College Associate Dean and Associate Professor of Family and Community Medicine. "First of all, it's coming to the realization that it is the end of life. Unfortunately, that is often something that patients and family members haven't really talked about or for which they have really prepared themselves.

"And, sometimes, the medical system doesn't really help with that because there are now more things that can be done for people, and sometimes to people, that in the absence of clarity as to what's really going on can be traumatic. I think that more and more patients and their family members find in retrospect, that their loved one may have been unintentionally hurt more than helped, even though that was no one's intent."

Dr. Robertson outlined some of the areas in which end-of-life care innovation is taking place. These include broadening the definition of the terminally ill to include patients with a range of chronic diseases, not just those with incurable cancer; a less rigid approach to advanced directives that are supposed to help guide treatment decisions; increased knowledge of prognostic indicators to determine when patients are in need of hospice care, and enhanced teamwork and communications skills.

He noted that while there has been progress in those and other areas of innovation in recent years, there is still a long way to go. In addition to changes within systems and institutions necessary to provide the best possible care for dying patients, he said, real change must also take place "within" individual physicians.

A Case in Point
"There needs to be some sort of a decisive moment that I think should be outlined by the physician the patient and family," said Dr. Robertson. "As an example, I've been taking care of a 95-year-old gentleman for the last twenty years who recently developed florid congestive heart failure and had become unresponsive. He and I had an intimate relationship and had discussed what his desires were should something like this occur. I called the person with this gentleman's power of attorney and we had a brief conversation. I said we could do a lot to try to reverse this, or we could do a lot to make him as comfortable as he could possibly be. My recommendation was that we do as much as we can to make him as comfortable as possible. He died peacefully about twelve hours later.

"The difficulty comes from the fact that people tend to think of heart disease in terms of 'well, we can fix that'. One of the problems with patients and physicians as well is that, when somebody has cancer, we think of that as being associated with a more terminal diagnosis. But many chronic diseases are just as life-threatening as is cancer. The failure to recognize them as such often exposes patients to a lot of unnecessary intervention. This is especially true when the doctors treating a seriously ill patient do not know the patient well."

In his studies, Dr. Robertson has included a chart of several diagnostic indicators to assist in determining hospice eligibility. "I think there are more specific criteria that physicians can look at," he said, "so that there are clear indicators that one can look at having to do with how long a person has been bed-bound, or if they are in end-stage dialysis, congestive heart failure, or chronic obstructive pulmonary disease. It's good for the physician to objectify the status of a person's illness, because if we don't, we are not helping patients and family members understand what is happening so that they may confidently make difficult decisions.

"One of the contributing factors may be that for some physicians, the issue of our own impending death is unresolved and so dealing with patients becomes an uncomfortable exercise. If as a doctor, you have dealt with that, you're in a better position to skillfully and honestly guide people through this very challenging process."

Understanding Advanced Directives
Advanced directives are basically a checklist of what should or shouldn't be done medically to prolong a person's life that the person signs, and presumably understands, prior to the time those decisions need to be made.

"Advanced directives remain a useful tool," said Dr. Robertson. "I don't think that I would change them. "The difficulty with advanced directives and powers of attorney is that they talk about things that people many not understand very clearly, such as 'if your heart should stop beating' or 'if you should stop breathing', what do you want done? Those situations don't always present themselves in that kind of a crystal clear moment. And even when people have specific advanced directives, in a significant percentage of the time the family overrides what the individual has requested. What I would recommend is to better educate not only physicians but nurses and other health care providers to be able to gently but directly tell an individual and/or the family that the future isn't looking very good in terms of longevity and/or quality of life.

"This is where I think the physician-patient relationship and/or physician-family relationship benefits by a kind of benevolent paternalism. This where I, as the physician, can step say, 'if this were my mother, my father, my brother, my sister, this is what I would recommend'. Right now, I think what many physicians tend to do is offer a sort of multiple-choice question: 'We can do A, B, C, D or E; what do you want to do?' And then we shift the entire responsibility to the patient or family, and to me that's not fair."

Different Settings Lessen Intimacy
The rise in nursing home use and the ability to care for ambulatory (not bedridden) patients at home for longer periods raise end-of-life care issues complicated by a lesser sense of intimacy between doctors and patients and their families. "The big problem that we have right now - and I'm thinking about the gentleman I was talking about earlier - I knew him well and loved him - is that there's a disconnect between the ambulatory setting and the hospitalized setting and the nursing home setting" said Dr. Robertson. "So you have many patients today who are dying in the presence of physicians who don't know them.

"Absent that knowledge, it's hard to say 'Hi, I'm Dr. Robertson and you're Joan Smith and your mother is dying'. Those kinds of conversations are challenging because of the lack of previous continuity and relationships. Physicians are relying more on hospitalists (physicians who work only in the hospital) for patients or nursing home medical directors, because it's no longer economically or practically possible for doctors to go to three or four different nursing homes or to the hospital to continue caring for patients that they've been seeing in the office."

Care Possible Even When Cure Is Not
The Medical College of Wisconsin's palliative care (comfort oriented as opposed to cure oriented) program has become a national model, just one of the many positive signs noted by Dr. Robertson that innovation in end-of-life care is starting to take hold and make better the quality of life in patients' last months and days.

"Once the decision has been made to provide palliative care, a team of competent providers steps in and eases the dying process," said Dr. Robertson. "The first thing that I did after the decision was made to allow my patient's dying process to proceed was to call in the hospice team. These are people who are very well trained to step into physically, medically and emotionally stressful circumstances and do compassionately what needs to be done.

"There are more courses in death and dying for medical students and residents in order to better educate them. This is an excellent beginning. The first time that you as a learner are faced with person who is dying should be a compelling experience and should be somewhat anxiety provoking. It takes practice and the need to learn from those who are experts at providing this kind of care. I believe that as physicians, we are trained to be an appropriately hopeful profession and almost always look to improve an individual's quantity and quality of life. There is a deeper understanding now that in some circumstances, we can be caring while knowing we are not going to be curing."

Dan Ullrich
HealthLink Contributing Writer

For more information on this topic, see the HealthLink articles Palliative Care Center Recognized as Model for End-of-Life Care and Documents Can Direct Care if You Can't (this article provides instructions for obtaining the Wisconsin Department of Health and Family Services advanced health directives forms).

MCW Health News presents up-to-date information on patient care and medical research by the physicians of the Medical College of Wisconsin.