Telling patients about death is a hard lesson to learn
Make hospice a part of medical education
Despite recent efforts to increase physician training in palliative care measures and improve access to hospice for terminally and chronically ill patients, many people still suffer needlessly at the end of life, experts contend.
A key problem, they say, is that physicians still are uncomfortable making the determination that a patient’s condition is not likely to improve and initiating a discussion about treatment alternatives.
"There are a lot of statistics showing that people get into hospice and die a week later," says Matt Stolick, PhD, assistant professor of philosophy at Findlay University in Findlay, OH. "Hos-pice never really gets a chance to help the dying patient achieve closure with the people around them."
According to statistics compiled by the National Hospice and Palliative Care Organization, 33% of those served by hospice in the year 2000 died after receiving care for seven days or less. The average length of service was 48 days and the median length of service was 25 days.1
Most people are eligible for hospice care under Medicare guidelines when they have a diagnosis of six months or less to live, Stolick notes. "If they have that six months to prepare, you are able to address a lot of those issues. If you pursue a cure until the end of life, these patients end up suffering the loss of that opportunity."
In an article in the recent issue of the American Journal of Hospice and Palliative Care, Stolick argues that medical student education must be expanded to include more student experiences with dying patients.2
In particular, hospice volunteer training might help students learn more about how to help terminally ill patients have a "good death," and the value that this has at the end of life, he says.
"My suggestion for this problem is working hospice volunteer training into medical education," Stolick adds. "This is something that I have done. I have worked as a volunteer with two different hospice organizations."
The volunteer training program, an eight-week course, forced Stolick to face his own feelings about death and dying, so that he was better able to consider the perspective of patients facing this reality.
"We did a lot of exercises that challenged us to consider our own mortality, and our own personal experiences with death," he explains. "Being open and honest, you really learn a lot about yourself. You cannot do the volunteer work effectively if you have not considered that you yourself are going to die and are no different from the person with whom you are visiting. I think it is obvious that that should carry over into medical education, especially for people who expect to face patients in the dying process."
As part of the volunteer training, Stolick and his colleagues were asked to pretend that they had just been given a diagnosis of six months or less to live and then answer a list of questions.
"The questions to ask are What are the most important things in your life?’ sort of getting you to write a personal narrative," he says. "What have you achieved? What is the meaning of certain events?"
As the volunteers answer the questions, they start to tell "their" story and realize that all people have a life narrative or story to tell, he says. "People are stories in a strong sense and understanding and being able to respectfully treat people as human beings can benefit from understanding them and what matters to them."
In another exercise, volunteers were asked to list eight of the most important people in their lives, and eight of the most important things, he adds. "Then, as you go through treatment’ you cut those in half, over and over, until you are just left with two items.
"It just shows you what is important in life and helps you understand the meaning of your life," he says.
Lying’ to patients
Many physicians have not had to address their own feelings about death and dying and are, therefore, unable to address the subject with their patients. The result, Stolick says, is that patients end up being misled about the reality of their situation, only to find out when it’s too late to do things they might feel necessary to do.
"I used the term lying’ in the article, and it was a very tough term for me to use because it seems intentional," he says. "To me, the lie that I am talking about is just ignoring the obvious. To just come in and do rounds, for example, and say, Keep up the good work,’ and Hope you’re feeling better’ to use general clichés from the patient’s point of view is just ignoring mortality and the reality of the situation."
Such interactions can not only be irritating to the patient, but may also keep that patient on a curative path instead of a palliative path, which may not be in his or her best interests.
Admittedly, physicians are not always able to tell from a patient’s condition whether they are within six months of the end of life, he notes. "Sometimes, you simply don’t know — in addition to all of the medical technology — you also have to consider the will of the person."
But, even in cases where it would seem obvious to a reasonable person that a discussion about palliative care measures should at least be initiated, these conversations often do not happen, he says.
"That is where my lie argument gets stronger. If they know, or have a pretty good idea, and are not initiating that discussion, that’s what we need to do something about here."
Professional mentoring vs. volunteer training
While many physicians do have problems communicating bad news to patients — particularly deciding when to initiate discussions about palliative treatment — hospice volunteer training is not the best solution, says David M. McGrew, MD, president of Hospice and Palliative Physician Services, LLC, in Spring Hill, FL. McGrew also is president-elect of the Glenview, IL-based American Academy of Hospice and Palliative Medicine.
"There’s no question that there is a problem, absolutely no question," he says. "I don’t necessarily think volunteer training in hospice would fix anything, though. I think what is really needed is more specific palliative care exposure, and hospice exposure from a physician’s standpoint, not as a volunteer."
McGrew practiced in general medicine before specializing in palliative medicine 15 years ago and says he sympathizes with the struggle physicians have in deciding when patients should begin considering comfort measures as opposed to curative treatment.
"I have some colleagues who do recognize the importance of hospice and palliative medicine, but they really struggle with that transition," he says.
Identifying triggering’ events is difficult
Part of the confusion stems from the difficulty physicians have in identifying "triggering" events in the patient’s course of care. The triggers should serve as a signal that a discussion about palliative care should be initiated, he says.
For example, a patient with congestive heart failure (CHF) or chronic obstructive pulmonary disease (COPD) who is hospitalized more than twice within a 12-month period should at least be asked to consider the goals of his or her care and what role palliation may play.
For patients with CHF and COPD who have two hospitalizations in that scope of time, the mortality rate in the following year is fairly high, he says. "The discussion we should be having is about hospice for many of these people."
Just initiating the discussion does not mean that you are asking the patient to "give up", he says. In fact, some patients may say that they want all possible measures to be taken, no matter what. But, they need to be presented with all of the options as well as realistic information about the expected outcomes of different treatments.
"The perception of most doctors is that most patients want anything and everything to be done," he says. "But, these decisions are most often made without informed consent. It is not as if anyone has explained to the patient what the issues are, they just say, Do you want everything done?’ Well, who in their right mind is going to say no?"
But just identifying the point at which discussions about treatment options should begin is difficult for many physicians, he continues.
"It’s different for different patients; that’s what makes it difficult. You can’t say that, Here are the times you should do it and here are the things to talk about.’"
Learning’ palliative care methods
It’s important for medical students to spend time with physicians who specialize in palliative care and in hospice care to get a sense of how these discussions should be initiated and when, and how these physicians make the decision, he says.
"A lot of it needs to be modeled by physicians who do the work. The communication issues really can’t be taught in a class," McGrew says. "Even if we ignored all the how-to’s, we’d be fine if we could get hearts won over and a belief on the part of physicians going into practice that it is not their job to necessarily save the patient at all costs."
Medical schools are beginning to include the "presence" of palliative medicine in their curricula, McGrew adds.
"When I started doing hospice work 15 years ago in Florida, none of the medical schools had exposure to hospice care and palliative medicine," he says. "Now we have mandatory presence, at some level, at all of the medical schools in the state. It is not what it should be, but it is a step in the right direction."
Communication issues are key
McGrew and Stolick agree that improved emphasis on communication skills will go the longest way toward improving end-of-life care.
"In volunteering, I talked with patients about their own life narrative, who they were, what they’ve done; and as we went through and came to their current situation, we just moved into talking about where they were doing, what their death meant to them," he says. "I tried to listen and not talk, but sort of be a mirror and be there for them. There is a rapport that needs to be built first."
Medical schools need to — as much as possible — re-emphasize the "softer" subjects in medicine, asserts McGrew. "It used to be in medical training that we got a lot of training in psychology, sociology, communication. These sorts of things are very important to what makes a good physician — being able to communicate with people," he says. "Medical schools now accept doctors for training based solely on intelligence, not communication skills. They look at your MedCat scores and your GPA."
But if you cannot communicate, you cannot do a good job of taking care of patients, he adds. "As the amount of clinical things that we need to learn increases, a lot of these other issues just get crowded out."
References
- National Hospice and Palliative Care Organization. Research Department. NHPCO Facts and Figures. Available on-line: www.hnpco.org.
- Stolick M. Overcoming the tendency to lie to dying patients. Am J Hosp Palliative Care 2002; 19(1).
Sources
- Matt Stolick, Assistant Professor of Philosophy, Main 313 A, 1000 N. Main St., Findlay, OH 45840-3695.
- David M. McGrew, MD, 4644 Keysville Ave., Spring Hill, FL 34608-3515.
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