How to Avoid the Healthcare Conveyor Belt
Individual Healthcare Goals
Asking, “What is the goal?” is the filter through which we should view all medical decisions. What is the overall goal for this person regarding healthcare decisions? The specific goals may be different for a twenty-year-old with a fractured pelvis than for an eighty-nine-year-old with a broken hip. And, not all eighty-nine-year-old people will have the same goals. One who lives independently and travels frequently may have different goals than an eighty-nine-year-old with dementia and congestive heart failure, who lives in a nursing home.
It is possible to avoid your own suffering or that of an aging parent and your family members by preventing unrealistic goals from driving the course of treatment. Even worse than unrealistic goals is when there are no specific goals. In these cases, it can seem that the healthcare system puts the patient on a conveyor belt and runs him through the system, blind to individual needs.
Healthcare goals cannot be generalized; they must be individual. And they should be the guiding force for physicians, as well as for family members who are advocating for the person. No medication, test or treatment should be agreed to unless it is to further the specific goals of the person. If the medical care is directed by what the patient has identified as her goals and values, then she will not be on the healthcare conveyor belt. She will be in control of the care because her values are driving the decisions.
The Slippery Slope of Healthcare as We Age
Medicine has made so many incredible advances; it can be easy to think that there is a way to avoid the unavoidable. Our lives on this earth are finite; each of us will come to the end of life at some point. Birth and death are perhaps the only two experiences that all people throughout time will share. While it is natural and perhaps healthy to want to postpone the end of life for as long as possible, there comes the point when delaying is futile and even harmful. Indeed, research tells us that increasing costs and adding advanced medical methods for people approaching the end of their lives do not improve care but can increase suffering. Instead of prolonging life, we prolong death and misery. Both the patient and his family members suffer this way.
Studies have repeatedly shown that more than 70% of us wish to die at home, and yet, only 20% to 30% of us do. Why is there such a disconnect? It is easier to see the reason when you look at the patterns most people follow as they age or as a chronic illness progresses. This is the slippery slope of healthcare, which we can see all around us.
As we age, new health problems often creep up on us. We start to manage high blood pressure, perhaps diabetes, and then a heart attack or stroke; also, kidney disease and congestive heart failure may be diagnosed. These are common scenarios. Undoubtedly, these issues need competent medical management, although some of the most effective ways to control these conditions involve lifestyle changes. It is clear that all too few of us are willing to put in the actual work of changing our diets and increasing our activities. As a result, we become frequent customers for our physicians, who work diligently to prescribe the appropriate medications, treatments, tests, and procedures to help improve our health.
It is easy to see how the slippery slope comes into play. Healthcare providers prescribe more medications and tests are ordered; soon, you are on the healthcare conveyor belt. The conveyor belt puts you through “standard” sets of care treatments rather than an individualized plan. This was the case when the ER doctor wanted to admit Mother after diagnosing her new onset atrial fibrillation.
At what point do we step in and say “no” to more medical interventions? I knew that Mother did not want to be in the hospital, and I was able to ensure that her goals were the driving force in the decisions. It can be difficult to know, right away, what to do when you are surprised by a new diagnosis, and you have not made a plan. Do you refuse the suggested treatment or intervention? That is a highly personal choice, but it needs to be a conscious choice. It should come from considering how we want to live the final years of our lives and from having discussions with our loved ones, as well as our doctors.
Some things to consider when you’re deciding:
• How many medical problems do you or your loved one have?
• What is the likely outcome of further medical interventions?
• What possible burdens do these interventions carry, as compared to the chances of benefit?
An important consideration regardless of age, but especially as we get older, is when and how to intervene, medically. We have to have a goal in mind before a crisis event because it is much more difficult to stop intensive treatments while they’re in progress, rather than just not implementing them in the first place. If in the course of a discussion about healthcare goals, you learn that your loved one had decided he does not want to be on a ventilator, that goal needs to be understood by all those involved. Otherwise, if there is a critical health event, you risk your loved one being placed on a ventilator with a breathing tube, which would be the exact thing he had said he did not want. This often happens when the doctors and nurses who are caring for a patient do not understand the patient’s healthcare goals. At that point, discontinuing that intervention becomes an emotional and sometimes difficult situation because of disagreements in the family as to how to proceed.
By contrast, if your loved one’s goals had been well communicated originally, he may have had the opportunity for a more peaceful death that honored his dignity because it respected his goals. Discuss your loved one’s goals (not being on a ventilator, for example) with his doctor, and if he lives in a nursing home, the nursing home staff needs to know. (Later in the book, there is information about advance directives that can help you share this important information.)
It's Too Soon Until It’s Too Late
It always seems too soon to have a conversation about how we want to live the last months, weeks, and days of our lives—until it is too late. Have the conversations and make plans before your medical problems become overwhelming. Have your healthcare goals in mind and on paper and share these goals with the people you love. If you are caring for a loved one, help that person set her goals by having a straightforward conversation.
It is easy to say, “Have the conversation,” but many people feel uncomfortable with it or that it is a morbid subject. In reality, talking about the end of life is a gift you can give someone. If the conversation is regarding your goals, it is a gift to let your loved ones know what your preferences are so they are not left wondering if they did the right thing. If it is a conversation you need to have with a parent or other loved one about her choices, then that, too, is a gift. You can give them the gift of letting them remain in control of their lives, even at the end of life.
One of the best resources I have seen is the Prepare for Your Care program (PrepareForYourCare.org). It is a well-researched and user-friendly website that walks you through the steps of clarifying and understanding your loved one’s goals. The professionals involved in creating the Prepare for Your Care program were led by dedicated palliative-care physicians who were determined to create a method for people to understand and communicate their values and goals. The website has information in many languages, and it is purposely written in an easily understood way. It also includes several short videos that show common scenarios of people going through the process of choosing a surrogate decision-maker, as well as identifying their healthcare wishes and how they want to live the last part of their lives.
Why We Cannot Wait for the Doctor to Start the Conversation
We place a great deal of responsibility on our doctors. But, in the area of end-of-life planning, they are frequently ill prepared. Until very recently, there was no formal training for medical students regarding this issue. Even now, it is inadequate, considering that, at some point, 100% of a physician’s patients will die.
It is interesting to note that, while a majority of primary care doctors have a positive view of patients creating a living will or another advance directive, fewer than 50% have one,of their own. Doctors who do have an advance directive are more likely to discuss this issue with their patients. Advanced-care planning is an area in which patients and family members need to be self-sufficient; doctors may not have the time or the inclination to initiate these important discussions.
Thank you for reading this partial chapter in the upcoming book: Getting The Best Care: Rescue Your Loved One from the Healthcare Conveyor Belt