Politics, Money, and Religion. These are the three things they tell you not to talk about at the dinner table. How you want to die isn’t mentioned because most people don’t need a reminder to avoid such a morbid and uncomfortable topic. It is so taboo most people don’t even discuss their end of life wishes with close family or like to think seriously about it themselves. Only a third of Americans over 65 have living wills and for people with chronic illness, that number hardly increases.
It doesn’t have to be that way. Let’s get armed with some information that makes the whole process less intimidating.
We’ll start our journey in the picturesque Midwestern town of La Crosse, Wisconsin. Known for its historic main street, it’s ranking as the 15th coldest city in America, and the fact that 96% of its population has an advanced directive in place before the time of their death. People discuss their end of life plans with each other as easily as they discuss the weather in La Crosse, but it wasn’t always this way – La Crosse was once just like the rest of the country.
Bud Hammes, the man that changed the culture of La Crosse works as a medical ethicist at a local hospital called Gundersen Health and just stopped being able to bear the terrible pain families, patients, and doctors were going through when they had to make end of life decisions without a plan. “The moral distress that these families were suffering was palpable,” he says. “You could feel it in the room.”
Bud started training nursing staff to ask patients about end of life care ahead of time on regular visits. In his first two years implementing the new procedure, advanced directives in the community rose from 2% to 45% and ultimately became commonplace throughout the town as more hospitals joined in and people started talking with each other about their plans. Finding the right time and way to talk to patients before crisis strikes are critical to success. With the elderly community, one fall, stroke, or deepening dementia can change everything so it is important to get these talks started early. Bud and his team now do training nationwide with the Respecting Choices organization to help all kinds of communities learn how to talk about advanced directives and living wills. Listen to Bud and some La Crosse residents describe their experienced here:
Family members and doctors are faced with difficult decisions every day trying to make the right choices for patients who can’t express themselves. It turns out that having a plan is critically important in dealing with grief and removing the constant guilty ruminating about whether you did the right thing, did enough, or did what your loved one would have wanted. Families that don’t know their parent’s wishes experience much higher rates of stress, anxiety, and depression. Having a plan helps provide a sense of clarity and purpose and in addition to getting the care you want, can be one of the greatest gifts you could ever give to your family members in a time of distress and mourning.
Perhaps more important than writing your wishes down is actually discussing them with your doctor and the people in your life so they are not caught off guard or in denial when the time comes. Of adults 75 and older, only 17% have talked to their families about their end of life plan. Select a person you trust to have power of attorney over your care and talk through what you want, but don’t stop there. The kitchen table conversation is a great place to start letting your loved ones know what you want and seeing if you can get them to open up about their wishes too. In fact, just like La Crosse, one person can make profound changes in the community around them when it comes to breaking the stigma of living wills.
Almost 30% of Medicare spending happens in the last six months of a patient’s life. “It turns out that if you allow patients to choose and direct their care, then often they choose a course that is much less expensive,” says Jeff Thompson, CEO of Gundersen. Of course, this is great for the strained healthcare system, especially with an aging population where care needs to be provided to increasing numbers of people and that money can contribute to better quality of life and preventative care programs for the elderly. But what these savings really mean in tangible terms is that the kind of care we are giving by default does not match up with what most people want for themselves. The only way to make sure you are getting the care you want is to specify and talk to the people in your life.
We often think that doing anything less than the absolute most aggressive treatment is like giving up on life, but it is more about how you want to live. It’s not about treating a disease or giving up on treatment. it is about finding out how to live well with the disease you have which may include treatment or a focus on the quality of time. “Nurses [In La Crosse] started asking patients questions like: If you reach a point where treatments will extend your life by a few months and side effects are pretty serious, would you want doctors to stop, or continue to do all that could be done? And a lot of patients said: Stop.”
The goal is to discuss your values and priorities. What’s important to you? What matters? And what makes you, well, you? Take a look at some of the questions on a typical advanced directive form. Filling out the form doesn’t mean your doctors won’t help you if you need it, it just means that they will be able to weigh your priorities against the risks of any given situation. These answers can be more of guidelines than hard rules and can be modified as your needs change but will help your doctors and family members understand your ultimate health goals to make informed decisions about your care.
It can be easier to see what we want when we are thinking of ourselves than for others. You may think that your family members will use the golden rule and treat you the way they would like to be treated, but when it comes to medical decisions this is generally not the case. People often ask for more aggressive treatments for their loved ones or patients than they would want for themselves. “When family members don’t know a relative’s wishes, they often feel they must show their love by asking that everything be done. Anything short of the maximum seems like abandonment or betrayal.”
When older doctors (mean age 68) filled out their advanced directives and were provided with a scenario with the potential for irreversible brain injury without a terminal illness, the vast majority of them asked to forgo many of the most common treatments they give to patients in similar situations by default. Take a look at some of their responses:
Listen to Doctors discuss their treatment decisions to get a better understanding of how the process works.
Your doctors and family members can make better decisions about which treatments are good for your specific situation and risk profile by referring back to the values and guidelines you’ve discussed with them or outlined in an advanced directive. An if at any point you want treatment stopped, there are excellent palliative care and comfort care nurses and physicians trained to ease suffering and relieve pain.
There is no reason to get intimidated by legal forms, the best place to start is with a conversation. First around the dinner table, and then in your doctor’s office.
If your community wants to have better conversations about end of life care, you can find great resources at respectingchoices.org