This article was originally a presentation to the University of Nebraska-Lincoln Retired Professor’s group, the Emeriti Association. Carol McShane is the owner of a registry of nurses in private practice, offering care management and advocacy services for many late-life elders. “The philosophy of Slow Medicine,” she says, “is central to our practice.” In this article, she offers a book review and comments from her four decades of experience advocating for elders.
A low rumble of interest is rising in what could become a paradigm shift in health care for late-life elders. Dennis McCullough, M.D., a graduate of Harvard Medical School with 30 years experience as a geriatrician, is advocating for “Slow Medicine.”
The metaphor “Slow Medicine” is derived from an Italian response, some 20 years ago, to the phenomenon of Fast Food. As connoisseurs of good eating, Italians didn’t want a McDonald’s on every corner; they resented and detested the idea that a meal could be prepared with factory-line haste and wolfed down without regard for content, company or conviviality. Larger Italian cities have, alas, lost the McDonald’s-on-every-corner battle, but there are still Italians who don’t like Fast Food, who know that it belittles the food and decimates the social graces of eating together. Hence the birth of the Slow Food movement.
This cry to slow things down is now being metaphorically applied to the practice of medicine, primarily for late-life elders. While it may be overly optimistic to suggest that this nascent movement is destined to be a paradigm shift, there are indications that Slow Medicine, more than “Fast Medicine” as we know it, has the potential to keep elders safe and comfortable and preserve their quality of life.
How can late-life elders resculpt the health care culture from Fast Medicine to Slow Medicine? Answering this is the work of Dennis McCullough’s book. The book has a silly, marketing-generated title: “My Mother, Your Mother.” The meat is in the small font trailer to the title: “Embracing ‘Slow Medicine,’ the compassionate approach to caring for your aging loved ones.” The intended audience for this book is adult children of parents over the age of 80. Elders themselves can learn from it, too.
The book is not a particularly good read because it is meant to be a geriatric primer in which McCullough prepares his readers to assist their parents through what he describes as the Eight Stations of Late Life. It’s a road map of sorts. Along the way he cites examples and problems and gives practical suggestions for getting through each station with dignity and respect based on his geriatric expertise and his knowledge of what’s going to happen.
And he is very clear: Death is what’s going to happen.
Author McCullough says we have to “face the inevitable irreversible decline of the very old,” to recognize that life will end … beyond just saying it. Do not deny, he says. Prepare for death. In my nursing practice, many times elders have told me, looking away, that they are going to die in their sleep. I ask if they are also going to win the lottery.
McCullough continues, “At age 80, an elder with an average life expectancy of ten years will, on average, experience seven-and-a-half years disability-free, followed by two-and-a-half years of being disability-burdened.” It is clear, he says, that the elderly want to die at home and often say, “When my time comes, let me go; I want to avoid the suffering I’ve seen my friends go through.”
The challenge is to plot a course to avoid or ameliorate suffering, not to end-run death with “medical miracles” that too often come in the form of more tests, more pills and more side effects, all of which result in repeated hospitalizations and finally institutionalization. Although this outcome for late-life elders is truly a fate worse than death, rarely are they consulted in a meaningful way that might halt the cascade of events that leaves them parked near the nurses’ station in a row of wheelchairs like birds on a wire, heads drooping.
McCullough writes that Slow Medicine for those in late life—those over 80—involves slowing down decision making; focusing on quality-of-life, outcome-based decisions; for physicians, knowing their patients and respecting what the patient really wants; knowing a patient’s family and honoring the normal aging process.
Instead of Slow Medicine, McCullough writes, all too often late-life elders get Fast Medicine, which, for those over 80, means experiencing “health care practices that have turned acute, fatal illnesses that used to be brief into a prolonged, poor quality death experience.” Fast Medicine says go to the ER, see another specialist, take another pill, have another test, do another surgery—often without regard for the cumulative effect on the quality of life for an elder.
Here’s an example from my nursing practice:
My colleagues and I offer care management services. Our clients are generally elderly folks, most of whom have either no family or family who live or travel out of town. We are engaged to help these elders navigate the health care maze as they try to get well or stay well and to preserve the spark that they might recognize as themselves. As we monitor and advocate, we come to know them well. We go to the doctor with them, help evaluate their response to prescribed medications, advise about nutrition and exercise, help supervise companions and generally try to keep them safe. We are on call to our clients 24/7; if they go to the emergency room, we go, too. At each turn in the maze, we advocate for the quality of life they have told us they want.
Let’s say I have a client in her mid-80s. Her companion calls me and says, “Something’s changed. She’s just not herself.” I go see her. Her companion is right; I may not be able to put my finger on it exactly, but something’s changed. Maybe a little stroke. I check her vital signs and ask her how she feels. Well, not so well, she says. With her permission, I call her family and then her primary-care physician, hoping the physician will invite me to bring her into the office. Nope. “Go to the ER,” the physician says. A crisis is the least opportune time to set a plan or fight the system. She reluctantly agrees. She is scared, and I know she will be more scared if I call the ambulance. I decide it is safe to take her in my car.
The emergency room is predictable: It is white and cold; lights are bright. You can never tell what time of day it is.
We give information. Wait. See a nurse; give the same information. Wait. See a physician; give information again. Wait. Have blood drawn, maybe an MRI or CT scan. The average is four hours.
The ER physician does not know her. But one thing I know and the ER physician knows is that this was most probably a little stroke (a Transient Ischemic Attack or TIA) and that nothing is likely to show on the tests. And because nothing shows on the test, it is unlikely the physician will order the clot-busting medication; she’s probably too old anyway.
My client is scared, worried about her future, worried about her cat at home. She has that sinking feeling, “they got me now.” She’s befuddled and can’t remember what she had for lunch. She just doesn’t want to be in a little gown in a big, cold tiled room where nothing and no one, except me, is familiar.
If this is true to form, this episode will be repeated three or four times, each time taking its toll. Dennis McCullough says, “Beware of magical thinking. Rather than a successful rehabilitation, a more likely course is that a first crisis will turn out to be the vanguard of a recurring pattern.”
Even if my client rehabs well the first time, she still goes back to her house compromised; another time she will rehab poorly and will go back to the assisted living more compromised; then she’ll go back to the nursing home. One of these times, it will be a big stroke, they won’t pull her through, and she will die. All of that—for what?
This is Fast Medicine.
What would this episode of a small stroke look like in Slow Medicine?
Maybe before, but certainly after the first small stroke, this client would have spoken with her family and her primary-care physician. She would have made clear that she was ready to just be comfortable. And her family and primary-care provider—physician, nurse practitioner, physician’s assistant—would have actually heard her. Someone would just stay with her and keep her comfortable.
So she wouldn’t go to the ER—no sirens and flashing lights, no impersonal four-hour stay on a hard gurney, no tests or needle sticks, no strangers examining and asking.
Regardless of whether she and her primary-care provider ascribe to Slow or Fast Medicine, for a person over 80 with a small stroke (from my experience, I’d put the age at 85), the outcome would probably be the same. Medicine can’t do much for a small stroke … take aspirin, keep blood pressure in check and hope for the best.
But, like the difference between the words “slow” and “fast,” the difference is in the passage of time. Ironically, with Slow Medicine she might not live as long, but she might die at home, hopefully in control of her environment. With Fast Medicine, she would probably live longer and die slower in a nursing home. If you ask them, most people over 80 or 85 would rather hope for the best with aspirin than a trip to the ER.
What if she dies? In the culture of Slow Medicine, she would have had good monitoring and comfort care; she would have a companion so she wouldn’t die alone, and she would have been helped to be ready. Death would then be the slow ebbing of energy—a natural death—no foreign place, no IV tubes, no feeding tubes, no breathing tubes, no bladder tubes, no needle sticks, no machines, no wrist restraints. (People don’t like tubes or machines attached to their bodies, so they fight them. They are then restrained.)
Dennis McCullough recognizes and wants others to recognize that Fast Medicine has no time to listen. It’s recipe medicine based on the Standard of Care backed up by the fact that Medicare will cover most tests and procedures. It seems to be free. Instead of diagnosing by common sense and experience, we get trapped in the medical culture of seemingly compulsory tests to rule this out and rule that out.
The result is, McCullough writes, that with Fast Medicine, in hospitals we see too many late-life elders “who are sedated, unable to communicate, subjected to enduring impersonal medical protocols in strange, disorienting surroundings or stranded in limbo on life-support machines while their families hover in waiting rooms.”
If you ask frail elders in such a situation, “Do you feel better? Do you have more energy?”, they would probably answer—if they could and if they feel they can be truthful –– “no, not really” or just “no.”
McCullough says that instead of feeling better, elders too often spend the last months of their lives “accumulating diseases, diagnoses, pills and more pills and sometimes surgery.”
Shifting from Fast to Slow Medicine
What’s to be done? McCullough’s suggestions are not obvious in the book because they are woven into the discussion of each of the Eight Stations of Late Life. Here, extracted, are some of McCullough’s hints to help shift the paradigm from Fast to Slow Medicine:
- Slow down—every medical event is not a crisis. “Wait and see” is often wise. It is usually OK to say, “I need more information or “I need more time to think about that.”
- Develop relationships: physician-patient, daughter/son-parent, and, in our case, nurse-client so that sensitive topics can be broached.
- Learn about normal aging so you know what’s to be expected and what is an actual disease process. In my experience, this distinction is critical. While you might cure or contain a disease, trying to cure what is normal aging can exacerbate problems. For example, diminished balance accompanies normal aging. If a patient falls and is referred to a neurologist or an ear, nose and throat specialist to rule out a myriad of diseases, the result will be more tests and pills with side effects that may actually cause another fall. On the other hand, if the patient is referred to physical therapy to learn techniques to maximize balance and strength or if he or she begins Tai Chi, other falls may be averted.
- Get ready: Stay mobile, put things in place early, i.e., power of attorney, living will, ethical will and funeral plans. I would add, move to a safer place—early. If you wait too long to move, you will not be physically able to clean out those closets. If you wait until you’re in crisis and have no safe housing in place and you have to act right now, your choices are limited. Too often you’ll have to settle for potluck.
- What’s to be done about all those pills? This even has a name now: polypharmacy. It is said that medications after the first four are merely chasing side effects. Do a little horse-trading with your primary-care provider. McCullough suggests that you ask if the desired effect can be achieved another way, without a systemic medication. If you must take medication, ask if this is the most basic medication and the lowest dose possible. Ask for trials without a medication or on a lower dose. Learn from your pharmacist.
- McCullough says this about tests: “Tests that merely exclude conditions with a low probability of being present may not be helpful.” Ask: What is the next step after the test. If this test is positive, then what? Surgery? Chemotherapy? Reconsider having the test if you will not take the next step.
- Consider palliative care—this is the heart and soul of Slow Medicine. A person in late-life may signal “just keep me comfortable.” This doesn’t mean do nothing. It means concentrating your health energy to get help to control discomforting symptoms like pain, indigestion, constipation, bladder incontinence and anxiety. Maintaining comfort is dependent on recognizing and catching small problems early. This a fundamental to preventive care and to my nursing practice. It is the challenge of Slow Medicine, and it can be hard work. Can Palliative Care mean no antibiotics? No trip to the ER? No hospitalization? Yes, it can, but the late-life elder or family gets to decide and the decision is based on what brings comfort and enhances quality of life.
- Consider hospice. Hospice is also palliative care, but palliative care is not hospice. The difference between them is that hospice is a distinct Medicare benefit that your physician has to order with the statement that it is likely that you will die in the next six months. When you elect the Medicare Hospice Benefit, you opt out of Medicare A. The Medicare Hospice Benefit pays for your medications, the equipment and some services needed to care for you. It does not, however, pay for room and board or round-the-clock attendants.
- In hospice, you generally discontinue medications and treatments that simply prolong life but not those that keep you comfortable. The difficult decisions come when a medication or treatment both prolongs life and keeps you comfortable. The hospice staff helps with these decisions. At any time you can opt out of the Medicare Hospice Benefit and go back to Medicare A.
- Become familiar with POLST (Physician Orders for Life Sustaining Treatment), a system originating in Oregon that expands advanced directives to include discussion of diagnostic testing, intravenous fluids, tube feeding and transfer to the hospital.
- Another suggestion from McCullough is to encourage elders to write an ethical will in which a person outlines their values, hopes, dreams and remembrances. In this way, one leaves not only money or physical property, one can leave a self-written footprint describing what has been important in his or her life.
- McCullough also recommends a community-based program called PACE: Program for All-Inclusive Care for the Elderly. Started in 1971in Chinatown, San Francisco, this not-for-profit is modeled after the British day hospital. Funded with Medicare, Medicaid and private-pay sources, it combines in-home care with all the necessary medical and social services that are actually brought to the elders at day-care centers. There are now 69 PACE communities in 29 states. None, alas, in Nebraska.
To this list I would add the Eden Alternative, which has evolved into the Green House movement. Founded by Dr. William Thomas in 1991, the goal is to restructure and humanize nursing homes so that the emphasis is on “home” and not “nursing.” Studies show that residents feel better and have better outcomes where the environment feels like home and the nurse has to ring the doorbell. Nebraskans can be proud that Tabitha in Lincoln opened the second Green House in the U.S. and soon will be hosting three more Green Houses.
Reviews of “My Mother, Your Mother”
Most reviews of Dennis McCullough’s “My Mother, Your Mother” (now more commonly known as “Slow Medicine”) are positive and call the book “a good start,” “a positive sign for modern medicine” and “a path toward saner health care.”
Others would like to have had more examples of Slow Medicine and hints on how to talk to one’s physician to bring him or her along in the concept of Slow Medicine. Some are concerned that Slow Medicine, as McCullough describes it, depends on solid family involvement—which can be hard to come by.
I have two concerns.
One is a disappointment that McCullough doesn’t address the very real problem faced by physicians who are trapped in the Fast Medicine mode by what is known as the Standard of Care. Fast Medicine, in fact, is predicated on the Standard of Care. It’s recipe medicine: If a physician sees this, this and this, he or she orders this test, this medication, this surgery. If the physician deviates from the Standard of Care, she or he is vulnerable to suit. This is a dilemma. In the end, I think the permission to countermand the rigidity of the Standard of Care will have to come from the patients themselves.
The other equally serious concern is one I share with Karen Stabinger, who reviewed the book in the Huffington Report. McCullough fails to discuss the danger of codifying that which should be a cultural change. Realistically, you have to grant that if the tenets of Slow Medicine were universally adopted, one result would be major cost savings for Medicare and Medicaid. This could foreseeably trigger efforts to adopt rules and regulations making the money-saving aspects of Slow Medicine mandatory.
This is the third rail of health care and can look like rationing. It is much different and preferable if a person chooses not to have an MRI than if a person is told, “Oops, your 85th birthday was yesterday. No MRI for you.” To practice Slow Medicine is to honor the desires and directives of late-life elders, person by person, choice by choice. Choices made mandatory are not choices at all. This is a danger that must be recognized and guarded against.
That being said, Dennis McCullough’s blueprint for Slow Medicine has great potential to make the last days and months of the old calm and peaceful. The book is an awakening. It challenges late-life elders, their families and their primary-care providers to take a hard look at what it once meant to “die of old age” and recognize how far afield we have come from what used to be a considered a natural death.
Do I presume too much when I assert that dying a natural death is what most late-life elders want? I don’t think so.
“My Mother, Your Mother: Embracing Slow Medicine, the Compassionate Approach to Caring for Your Aging Loved Ones,” written by Dennis McCullough, M.D., (HarperCollins, 2008) is available at http://www.betterworldbooks.com, which offers free shipping and contributions made to end illiteracy, as well as http://www.amazon.com.