Retiring on our own terms – Choosing End of Life options
What we’d most want our friends and loved ones to know
Of all of the topics we cover, this is by far the most emotionally difficult one to deal with. But deal with it we must. The bottom line is that as we approach our final years, months, weeks and days, someone will make decisions about the treatments we receive and the quality of our remaining life.
We can either prepare to make these decisions ourselves and prepare for our possible mental incompetence in advance, or, in the event of our mental incompetence, we can abdicate those decisions to someone else.
If that someone else is a loved one, we’ll put them in the very emotionally difficult position of trying to decide what’s best for us. It’s not unusual for siblings to fight bitterly over end of life decisions for their dying parents, and for that bitterness to endure long after Mom or Dad has passed away.
If that someone else is our attending physician, the result will almost certainly be to administer every possible treatment to prolong life, regardless of the negative impact those treatments have on the quality of our remaining time, and regardless of the costs.
In a gross oversimplification, we may be faced with a scenario we’re wholly unprepared for, such as;
One option is to make you as comfortable as possible, manage your pain, and send you home to let you be with your family and let nature take it’s course.
Another option is to keep you in the hospital and give you this treatment, which may prolong your life.
The very unfortunate truth is that, when discussing our options, our providers often don’t realistically paint the picture and we don’t know what questions to ask. How would our decisions differ if they were presented this way?
One option is to make you as comfortable as possible, manage your pain, and send you home to let you be with your family and let nature take it’s course. Based on my experience with other similar patients, we can likely do a pretty good job managing your pain, and your mobility and mental acuity will likely stay about as they are until close to the very end. If forced to guess, you likely have 4-6 months left. Maybe less, maybe more.
Another option is to keep you in the hospital and give you this treatment, which may prolong your life. Past experience with similar patients, as well as the clinical studies, indicate that of 100 patients receiving this treatment, 20-40% will live a few weeks longer, maybe even a month or two longer than those who don’t receive the treatment. There’s no good way to predict which group you might be in. Almost all of the patients who receive the treatment will experience some degree of side effects, such as nausea and vomiting, headaches, severe fatigue, difficulty sleeping, joint pains. About 10% can have a serious reaction that causes further organ failure, such as liver or kidneys, and actually shortens your remaining time. You would not be able to leave the hospital for another month while the treatments are being administered and could only leave after that if you are one of the ones who get a positive response. The total cost of the treatments will be about $80,000 – $200,000, but Medicare will pay for most of that. However, there are often co-pays and patient portions that could be as much as $10,000 – $20,000.
While this sounds like a dramatic example, it’s not unusual. Under some circumstances, the offering could be for something experimental where the out of pocket costs could be upwards of $60,000 or more. More common examples include treatments and procedures for elderly patients who have lost the ability to make their own decisions – such as those with Alzheimer’s disease or in the advanced stages of dementia – and for whom a natural process of their illness, such as a pneumonia or blood infection, begins to shut down their bodies and proceed to death. Do we want to continually have that natural process interrupted? If we no longer recognize our loved ones, or have any grasp of reality, would we want CPR after our heart stops beating? Would we want it if we understand that CPR on elderly patients tends to have about a 1% success rate? Would we want a pacemaker or other major surgery that would only prolong existence? A feeding tube to do the same?
More glimpses into some of the realities:
Your doctor has a deep, personal investment in eradicating disease and prolonging life. Aggressive treatment and optimism is inculcated from day 1 of training. Many feel they are competing with disease and death, and they absolutely hate to lose. Does this result in bias toward aggressive treatment – even when there are very long odds for a positive result? To do ‘everything possible’? It does. Ironically, during residency these young doctors often become extremely ethically and morally conflicted after several situations where patients and families experience the physical and emotional effects of futile care at the end of life. Despite this fact, just as it is very hard for a family to emotionally let go of a loved one, it is very hard for a physician to shift from a lifetime of effort at saving life to “letting it go” and feeling like they are “doing nothing”. There are potent emotional drivers all around pushing the train in the direction of “do something”. When added to the increasing availability of high-tech “stuff” with which to “do something”, it is a perfect recipe for the current situation.
The institutions your doctors work for, and most specifically hospitals, have a deep cultural investment in eradicating disease and prolonging life. Aggressive treatment and optimism is inculcated into all they do. Generally speaking, the bigger the hospital, the more structured their processes. This is especially so in academic medical centers that are densely staffed by residents in training. Does this result in a bias toward aggressive treatment – even when there are very long odds for a positive result? To do ‘everything possible’? It does.
Many of these end of life procedures are extremely profitable. Does this result in a bias toward aggressive treatment – even when there are very long odds for a positive result? To do ‘everything possible’? You decide.
If a loved one is put in the position of having to make your treatment decisions, they’ll likely be in extreme emotional distress. Does this result in bias toward aggressive treatment – even when there are very long odds for a positive result? To do ‘everything possible’? You decide.
Medicare pays for many or most of these procedures, regardless of the chances that they will actually prolong life, and regardless of the impact on remaining quality of life, or even the safety of the patient. Medicare will pay $100,000 for an open heart surgery on a patient that is so frail they’re highly likely to not survive the procedure. Up to 25% of all Medicare payments each year are for care during the last year of life.
Medicare doesn’t pay for everything. If we’re not careful in our decisions, we might not only experience unnecessary suffering, we might also deplete or even wipe out our estates.
By far, the sub-population that is most likely to have thought through their own desires regarding end of life care, and to have air tight Advance Directives, and to be crystal clear on when they want their own care to stop, is physicians. They either experience or have heard the stories within their own circle about the tragic and avoidable suffering that patients go through as the result of fruitless, futile, overly aggressive end of life care. They have watched families torn apart when forced to make extremely difficult decisions on behalf of their loved ones. And they refuse to let that happen to them or their families.
Most of us (>80%) have strong feelings about how we want our final days to unfold. But few of us (<30%) have attempted to document those feelings via legal documents (such as an Advance Directive).
Many of us who have created Advance Directives will still not have our wishes respected by our providers because the AD’s either are not available, are too vague for our specific situations, or they have not been discussed in sufficient detail with our loved ones or designated Proxies.
The situation is getting worse, not better. Between the Institute of Medicine’s 1997 and 2015 studies, the number of us undergoing unnecessary suffering at the end of life has increased by more than 12% despite efforts to the contrary.
How we might help
To help you understand what may happen during your final months of life, and prepare you emotionally and legally to choose how decisions are made on your behalf. At the end of this section, you will be prepared to decide what combination of emotional preparation, legal documents, and discussions with family and loved ones are needed so you can determine how your final chapter in life unfolds.
Some areas we’ll cover
How can I prepare in advance to have the best chances of having my desires respected? And how do I decide what beliefs and values are important to me in these decisions, and make sure they’re considered in my decision-making? (For those of you who want to jump right in and bang out your Advance Directive, go here for a step by step guide)
Remember: We coach, support, educate, and empower. We illuminate options you may not have known you had. But we don't decide what's right for you in your unique circumstances; only you can do that. And we don't provide medical, financial, or legal advice; nor do we replace the valuable counsel of those who do.