From both an individual and a public health perspective, frailty is one of the most important conditions affecting older people. Along with dementia, which is really just cognitive as opposed to physical frailty, it is a devastating syndrome. Frailty predisposes to recurrent hospitalizations and leads to the dreaded cascade of iatrogenic complications once someone is in the hospital. Frailty leads to nursing home placement and to disability and death. So a recent consensus statement discussing how to approach frailty is one of the most exciting and significant papers to appear in the recent geriatric literature. Published in a third tier medical journal, it’s only by chance that I stumbled on the article at all.
The consensus paper, authored by 20 geriatricians and including some of the most distinguished figures in the field, is based on a conference convened a year ago for the sole purpose of arriving at a shared perspective on frailty. It offers a definition of frailty, a few validated simple screening tests, several possible medical interventions, and the recommendation that physicians routinely screen for the disorder in people over age 70. The definition the authors came up with is “a medical syndrome with multiple causes and contributions that is characterized by diminished strength, endurance, and reduced physiologic function that increases an individual’s vulnerability for developing increased dependency and death.” Sounds like something written by a committee, but it hits all the high points. One of the screening tools the authors favor is the FRAIL questionnaire. Ask 5 simple questions: are you tired (Fatigue); are you unable to walk up 1 flight of stairs (Resistance); are you unable to walk 1 block (Aerobic); do you have more than 5 illnesses (Illness); and have you lost more than 5% of your weight in the past 6 months (Loss of weight). A score of 3 or greater (a yes answer counts as 1 point) indicates frailty. A score of 1 or 2 implies pre-frailty.
Frailty can seldom be cured and is often progressive, but in some cases it can be ameliorated. Exercise, nutrition, and medications can all help. In particular, the authors cite a review article indicating that 45-60 minutes of exercise done 3 times a week is beneficial. Calorie supplements can promote weight gain and reduced mortality in those frail old people who are undernourished. In people with a low vitamin D blood level , vitamin D supplements can reduce falls, hip fractures, and mortality. Reviewing all prescription medications and getting rid of selected drugs can also be useful. Finally, the conference concluded that primary care physicians as well as other clinicians should routinely screen for frailty in the geriatric population.
No one wants to be labeled “frail.” It’s up there along with “elderly” or “old” as a term everyone seems to want to avoid. But far better to prevent or treat the condition than to pretend it doesn’t exist. It’s time for doctors to pay attention to frailty—to recognize when it’s present and to intervene when possible. How’s that for a New Year’s Resolution!
LIFE IN THE END ZONE: A discussion of topical issues for anyone concerned with the final phase of life by Muriel R. Gillick, MD
December 23, 2013
December 16, 2013
A Rare Win Win in Medicine
How often does anyone come up with an idea for improving medical care that does good and saves money at the same time? Not very often. Even inventions that ought to save money often don’t—for instance, a number of years ago, surgeons figured out how to take out a person’s gallbladder using a fiberoptic device called a laparoscope. Instead of a five-inch incision, patients have a one-inch incision; instead of a 5-day hospitalization, they spend a single night in the hospital; instead of a 6-8 week recuperation period, patients are up and about within days. Good idea? Absolutely. Money-saving? Not so clear. What happened is that the rates hospitals charged for the procedure were based on the “equivalent” alternative procedure that insurers were used to paying for, so the per procedure charge wasn’t much less than standard gallbladder surgery that involves cutting open the abdomen. Not only that, but the total number of people getting gallbladder surgery went up dramatically after the simpler procedure was introduced. Net result? No decrease in overall spending on taking out people’s gallbladders. So when something comes along that both improves outcomes and saves money, it’s worth taking note and celebrating. Palliative care, as a recent article in the New England Journal of Medicine points out, is exactly that kind of remarkable invention.
Palliative care is not synonymous with hospice care. It is not the same as end-of-life care. And it is not a court-of-last-resort, what you get when you’ve exhausted all possible other treatments. Palliative care, as the Center for the Advancement of Palliative Care defines it, is “an extra layer of support,” something that is appropriate at “any stage in a serious illness.” Patients can have palliative care and life-prolonging treatments; they can, for instance, have chemotherapy or radiation therapy as treatment of cancer along with palliative care. What palliative care adds to conventional treatment is a whole team of clinicians (typically a doctor, nurse, and social worker, though it can include a chaplain or music therapist or other professional) whose focus is on managing symptoms (problems such as pain or nausea or depression), on advance care planning (on preparing for future medical care), and on providing psychosocial support to the patient with a life-limiting illness and his or her family.
Several studies have now shown that early palliative care improves quality of life and may even lengthen life. In advanced lung cancer, in which patients typically have a prognosis of at most a year, patients who received outpatient palliative care along with conventional cancer care were less depressed, had fewer physical symptoms, and actually lived longer than those who did not get palliative care. Similar findings have been reported for people with severe heart failure, severe chronic lung disease, and for people with multiple sclerosis. My clinical work suggests the same is true for older people with physical frailty or with cognitive frailty (dementia).
What’s remarkable is that palliative care also saves money. It leads to shorter hospital stays, fewer days spent in an intensive care unit, and fewer expensive tests, all without shortening life. But most patients with life-threatening illnesses do not receive palliative care services? Why not? The New England Journal article suggests that the way to improve the situation, and implicitly the reason for the current limitations, is by changing the payment system so that insurers would pay physicians for counseling about end of life care, by reforming the medical education system to increase palliative care training, and by improving access to palliative care by making consultation available at all hospitals. These are all reasonable strategies, but I don’t think they get to the heart of the problem.
The main barrier to extending the benefits of palliative care more widely is not economic—palliative care physicians have been successfully billing Medicare and other insurers for their services for years by transforming a “family meeting” into a “history and physical examination” through the inclusion of a few comments about the patient’s medical problem (the “history”) and appearance (“physical examination”) into the medical record. The main barrier to more widespread use of palliative care is psychological. Even though patients and their families who do avail themselves of palliative care generally like what they get, many patients refuse palliative care services because they do not want to face their mortality. At the same time, physicians do not want to propose palliative care because they think they are conceding defeat in the “fight against death.” And Congress does not want to legislate changes in Medicare and Medicaid that mandate broader use of palliative care because of the "death panel" legacy. The truth is that we are all mortal. The question is not whether we will die but what our journey will look like. Maybe it’s time to face this reality.
Palliative care is not synonymous with hospice care. It is not the same as end-of-life care. And it is not a court-of-last-resort, what you get when you’ve exhausted all possible other treatments. Palliative care, as the Center for the Advancement of Palliative Care defines it, is “an extra layer of support,” something that is appropriate at “any stage in a serious illness.” Patients can have palliative care and life-prolonging treatments; they can, for instance, have chemotherapy or radiation therapy as treatment of cancer along with palliative care. What palliative care adds to conventional treatment is a whole team of clinicians (typically a doctor, nurse, and social worker, though it can include a chaplain or music therapist or other professional) whose focus is on managing symptoms (problems such as pain or nausea or depression), on advance care planning (on preparing for future medical care), and on providing psychosocial support to the patient with a life-limiting illness and his or her family.
Several studies have now shown that early palliative care improves quality of life and may even lengthen life. In advanced lung cancer, in which patients typically have a prognosis of at most a year, patients who received outpatient palliative care along with conventional cancer care were less depressed, had fewer physical symptoms, and actually lived longer than those who did not get palliative care. Similar findings have been reported for people with severe heart failure, severe chronic lung disease, and for people with multiple sclerosis. My clinical work suggests the same is true for older people with physical frailty or with cognitive frailty (dementia).
What’s remarkable is that palliative care also saves money. It leads to shorter hospital stays, fewer days spent in an intensive care unit, and fewer expensive tests, all without shortening life. But most patients with life-threatening illnesses do not receive palliative care services? Why not? The New England Journal article suggests that the way to improve the situation, and implicitly the reason for the current limitations, is by changing the payment system so that insurers would pay physicians for counseling about end of life care, by reforming the medical education system to increase palliative care training, and by improving access to palliative care by making consultation available at all hospitals. These are all reasonable strategies, but I don’t think they get to the heart of the problem.
The main barrier to extending the benefits of palliative care more widely is not economic—palliative care physicians have been successfully billing Medicare and other insurers for their services for years by transforming a “family meeting” into a “history and physical examination” through the inclusion of a few comments about the patient’s medical problem (the “history”) and appearance (“physical examination”) into the medical record. The main barrier to more widespread use of palliative care is psychological. Even though patients and their families who do avail themselves of palliative care generally like what they get, many patients refuse palliative care services because they do not want to face their mortality. At the same time, physicians do not want to propose palliative care because they think they are conceding defeat in the “fight against death.” And Congress does not want to legislate changes in Medicare and Medicaid that mandate broader use of palliative care because of the "death panel" legacy. The truth is that we are all mortal. The question is not whether we will die but what our journey will look like. Maybe it’s time to face this reality.
December 08, 2013
Words, Words, Words
Physicians are not known for their communication skills. Despite sessions in medical school and during residency addressing topics such as “breaking bad news” and “discussing prognosis,” clinicians still do not perform well. A new program for both doctors-in-training and nurse practitioner students sought to improve the poor track record.
Participating students attended eight 4-hour workshop sessions addressing communication in end-of-life care. Each session included a short lecture, a demonstration by a faculty member of good communication, a practice session for the trainees using a simulated patient, and a discussion. A total of 184 students completed the workshops; another 222 completed “usual education.” (The vast majority were physicians- in-training and only a few were NP students, so I will restrict my comments to doctors). The students were evaluated for their proficiency in communication and their skill in providing end-of-life care after the educational intervention, with physicians, patients, and family members all contributing to the evaluation process. The bottom line: the workshops did not appear to accomplish anything. Students who participated in the workshops performed at almost exactly the same level as those who received the “usual education,” both in their communication skills and in their delivery of end-of-life care. In fact, the only measurable difference between the two groups was that patients whose physician had taken the training were more likely to end up being depressed than those whose physician did not. What are we to make of these findings?
The authors offer several interesting possible interpretations. They point out that an earlier study showed that patients who understood they had a very poor prognosis were more likely to rate their physicians’ communication skills as poor than those who incorrectly believed their prognosis was pretty good. So it is entirely possible that what palliative care physicians mean by “good communication skills” is not what patients and families mean. Palliative care doctors think that good communicators give patients a realistic understanding of their clinical situation and elicit their patients’ preferences for future medical care, all in a compassionate and caring way. Maybe patients and families equate “good communication” with encouragement, or instilling hope, or holding out the prospect of cure, however implausible cure may be. Maybe objective assessments by trained faculty are a better way of evaluating success than are patient and family reports; it turns out that when faculty did the evaluating, they found that students did improve after the workshop. Maybe expecting that the students would do a better job providing end-of- life care after a workshop on communication was naïve; after all, excellent end-of-life care includes expert pain management, good diagnostic skills, and appropriate referral to other clinicians, not just good communication.
I’d like to suggest a different conclusion. Perhaps it’s time to stop investing so much effort in trying to change physicians. We should turn instead to a radically different way of educating patients and helping them make the difficult decisions they face near the end of life. One of my colleagues has taken just such a tack. He designs short videos to show patients and their families the medical conditions they have and the interventions they might be offered. Multiple studies have now demonstrated that patients who watch these videos have a much clearer idea of what is at stake and express different preferences from patients who hear a verbal description of their disease and the options for treatment. The videos do not replace clinicians; rather, they give patients a strong foundation on which to build when they talk with their physician. They allow doctors to go beyond explaining the basics and they allow patients to apply the information they have learned to their specific situation.
Most of my career has been devoted to trying to be the best possible communicator with my patients, on the one hand, and to writing books and articles to help clinicians and patients make better decisions, on the other. So it pains me to think that this intensely verbal approach may just not be as effective as carefully constructed videos that show the realities of advanced illness and contemporary treatment. I will continue to write (this blog included) because that’s what I do. But I will also partner with my young colleague to create scientifically accurate videos, reviewed by experts, that complement all those words.
Perhaps Eliza Doolittle put it best, in My Fair Lady:
Words, words, words
I’m so sick of words…
Sing me no song, read me no rhyme,
Don’t waste my time, show me!
Please don’t implore, beg or beseech,
Don’t make a speech, show me!
Participating students attended eight 4-hour workshop sessions addressing communication in end-of-life care. Each session included a short lecture, a demonstration by a faculty member of good communication, a practice session for the trainees using a simulated patient, and a discussion. A total of 184 students completed the workshops; another 222 completed “usual education.” (The vast majority were physicians- in-training and only a few were NP students, so I will restrict my comments to doctors). The students were evaluated for their proficiency in communication and their skill in providing end-of-life care after the educational intervention, with physicians, patients, and family members all contributing to the evaluation process. The bottom line: the workshops did not appear to accomplish anything. Students who participated in the workshops performed at almost exactly the same level as those who received the “usual education,” both in their communication skills and in their delivery of end-of-life care. In fact, the only measurable difference between the two groups was that patients whose physician had taken the training were more likely to end up being depressed than those whose physician did not. What are we to make of these findings?
The authors offer several interesting possible interpretations. They point out that an earlier study showed that patients who understood they had a very poor prognosis were more likely to rate their physicians’ communication skills as poor than those who incorrectly believed their prognosis was pretty good. So it is entirely possible that what palliative care physicians mean by “good communication skills” is not what patients and families mean. Palliative care doctors think that good communicators give patients a realistic understanding of their clinical situation and elicit their patients’ preferences for future medical care, all in a compassionate and caring way. Maybe patients and families equate “good communication” with encouragement, or instilling hope, or holding out the prospect of cure, however implausible cure may be. Maybe objective assessments by trained faculty are a better way of evaluating success than are patient and family reports; it turns out that when faculty did the evaluating, they found that students did improve after the workshop. Maybe expecting that the students would do a better job providing end-of- life care after a workshop on communication was naïve; after all, excellent end-of-life care includes expert pain management, good diagnostic skills, and appropriate referral to other clinicians, not just good communication.
I’d like to suggest a different conclusion. Perhaps it’s time to stop investing so much effort in trying to change physicians. We should turn instead to a radically different way of educating patients and helping them make the difficult decisions they face near the end of life. One of my colleagues has taken just such a tack. He designs short videos to show patients and their families the medical conditions they have and the interventions they might be offered. Multiple studies have now demonstrated that patients who watch these videos have a much clearer idea of what is at stake and express different preferences from patients who hear a verbal description of their disease and the options for treatment. The videos do not replace clinicians; rather, they give patients a strong foundation on which to build when they talk with their physician. They allow doctors to go beyond explaining the basics and they allow patients to apply the information they have learned to their specific situation.
Most of my career has been devoted to trying to be the best possible communicator with my patients, on the one hand, and to writing books and articles to help clinicians and patients make better decisions, on the other. So it pains me to think that this intensely verbal approach may just not be as effective as carefully constructed videos that show the realities of advanced illness and contemporary treatment. I will continue to write (this blog included) because that’s what I do. But I will also partner with my young colleague to create scientifically accurate videos, reviewed by experts, that complement all those words.
Perhaps Eliza Doolittle put it best, in My Fair Lady:
Words, words, words
I’m so sick of words…
Sing me no song, read me no rhyme,
Don’t waste my time, show me!
Please don’t implore, beg or beseech,
Don’t make a speech, show me!
December 02, 2013
Aging Well
My mother will turn 88 in a few weeks. According to the definition of successful aging put forward by Rowe and Kahn nearly 16 years ago, she is aging quite well. Her kidneys, lungs, and heart work fine. She is still very active—she teaches a French class once a week at the local senior center, she tutors English to foreigners, she plays scrabble with friends, and she drives daily to visit my father at the nursing home where he lives. My mother does have her share of medical problems: she has painful arthritis affecting her knees and her back and she is very weak, finding it difficult to turn a door knob or to lift a container of milk. Until about a year ago, she walked at least a mile every day, but now she can only take short walks and has to sit down frequently. Her memory isn’t what it once was, though it’s still pretty good. My mother will say that “old age is no picnic” and that “people live too long” today. When her physician told her she was aging gracefully, she told him he was full of it. Her doctor has one perspective on successful aging; she has another one. How are we to put the two views together? Are we using the right definition of “successful aging?”
A new study in The Gerontologist tries to answer this question. The authors carried out in-depth interviews with 56 elders who have significant disabilities and are enrolled in the On Lok program, the original PACE program (Program of All Inclusive Care for the Elderly) in San Francisco. Members of PACE all have enough disabilities to qualify for entry into a nursing home and for Medicaid enrollment, so they are both frail and poor. In fact, the group studied had an average age of 78; 64% were women; the average number of ADL dependencies (problems in areas such as bathing or dressing) was 2.2 and the average number of IADL dependencies (areas such as food shopping or cooking) was 6.6. It was a diverse group, with 23% African American, 32% Asian American, 20% white, and 20% Latino.
By and large, the group held the view that aging is an unavoidable process that entails disability. The key to successful aging, they said, was to accept your limitations and to adapt. If you have trouble walking, use a walker. If a walker isn’t enough, use a wheelchair. They also tended to focus on relative disability rather than absolute disability—as long as there were others who were worse off, then they felt they were doing well. The minority who said they hadn’t aged successfully commented that they had not found ways to adapt to their disabilities and they felt were a burden to their families.
So the PACE elders and my mother don't have quite the same perspective. My mother would agree that it’s critical to accept your limitations and to adapt, and she's done that. She doesn’t want to be a burden on anyone, and she isn't. But I doubt she would say she is “aging well." She is aging better than my father, who has dementia and Parkinson's and lives in a nursing home because he needs help with just about everything, but she wouldn't call herself a phenomenal success.
Perhaps the whole idea of “successful aging” or “aging well” is the wrong way to think about this phase of life. For no other stage of development do we assign grades: we don’t say someone had a “successful childhood” or a “failed adolescence.” We might refer to their emotional state during a particular stage: someone might have a “happy childhood” or a “troubled adolescence.” We might use the label “successful” for a career or a marriage, but not for a part of the life cycle. So why do we insist on evaluating aging in this way?
Instead of grading aging, government and professionals should do work to assure that people are satisfied with their lives and are contributors to their community. After all, this is arguably the goal for the entire population, regardless of age. Our challenge is to figure out how to achieve this for people who are old and frail, whether because of physical impairments, cognitive impairments, or both.
Just as we cannot eradicate inequality among people—they have different genetic endowments, they are born into different families and different cultures—but we can aspire to provide equal opportunity, perhaps our goal for older people should similarly be to promote equality of opportunity. We cannot eliminate differences in disease burden or disability, but we can seek to assure that everyone has a fair chance to make the most of themselves, whatever their situation. It’s time to switch from talking about “successful aging” to coming up with a successful aging policy.
A new study in The Gerontologist tries to answer this question. The authors carried out in-depth interviews with 56 elders who have significant disabilities and are enrolled in the On Lok program, the original PACE program (Program of All Inclusive Care for the Elderly) in San Francisco. Members of PACE all have enough disabilities to qualify for entry into a nursing home and for Medicaid enrollment, so they are both frail and poor. In fact, the group studied had an average age of 78; 64% were women; the average number of ADL dependencies (problems in areas such as bathing or dressing) was 2.2 and the average number of IADL dependencies (areas such as food shopping or cooking) was 6.6. It was a diverse group, with 23% African American, 32% Asian American, 20% white, and 20% Latino.
By and large, the group held the view that aging is an unavoidable process that entails disability. The key to successful aging, they said, was to accept your limitations and to adapt. If you have trouble walking, use a walker. If a walker isn’t enough, use a wheelchair. They also tended to focus on relative disability rather than absolute disability—as long as there were others who were worse off, then they felt they were doing well. The minority who said they hadn’t aged successfully commented that they had not found ways to adapt to their disabilities and they felt were a burden to their families.
So the PACE elders and my mother don't have quite the same perspective. My mother would agree that it’s critical to accept your limitations and to adapt, and she's done that. She doesn’t want to be a burden on anyone, and she isn't. But I doubt she would say she is “aging well." She is aging better than my father, who has dementia and Parkinson's and lives in a nursing home because he needs help with just about everything, but she wouldn't call herself a phenomenal success.
Perhaps the whole idea of “successful aging” or “aging well” is the wrong way to think about this phase of life. For no other stage of development do we assign grades: we don’t say someone had a “successful childhood” or a “failed adolescence.” We might refer to their emotional state during a particular stage: someone might have a “happy childhood” or a “troubled adolescence.” We might use the label “successful” for a career or a marriage, but not for a part of the life cycle. So why do we insist on evaluating aging in this way?
Instead of grading aging, government and professionals should do work to assure that people are satisfied with their lives and are contributors to their community. After all, this is arguably the goal for the entire population, regardless of age. Our challenge is to figure out how to achieve this for people who are old and frail, whether because of physical impairments, cognitive impairments, or both.
Just as we cannot eradicate inequality among people—they have different genetic endowments, they are born into different families and different cultures—but we can aspire to provide equal opportunity, perhaps our goal for older people should similarly be to promote equality of opportunity. We cannot eliminate differences in disease burden or disability, but we can seek to assure that everyone has a fair chance to make the most of themselves, whatever their situation. It’s time to switch from talking about “successful aging” to coming up with a successful aging policy.
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