(Editor’s Note: The following is by hospice physician Karen Wyatt and previously appeared on HuffPost and on her own End-of-Life University Blog. — KTB)
A recent review article has shown that patients who have planned in advance for the end of their lives spend less time in the hospital, receive fewer intensive treatments, and have greater quality of life when they reach their final days. In addition, their surviving relatives experience less stress, anxiety and depression during the process.
These findings from studies that have been conducted over several years at multiple sites present a compelling argument for planning ahead for the end-of-life and completing advance directives. Yet recent statistics show that only 20-30 percent of Americans have actually put their healthcare wishes in writing in the form of a living will or other legal document, so as a nation we are vastly unprepared for the end-of-life.
To make matters worse, even when advance directives have been put in writing there are several reasons why patients may still not receive the care they have requested. Here are six common mistakes for you to avoid when doing your own end-of-life planning:
1. Putting it off for a later time
According to a survey conducted by The Conversation Project, some respondents say they have delayed completion of advance directives because it’s too early to think about it or they’re not sick yet. But evidence shows that making choices for end-of-life care is more difficult during a crisis situation. In addition, some preferences, such as avoiding CPR, may not be possible if they are not in writing before an emergency occurs.
The best time to do advance care planning is right now, as soon as the thought occurs to you. Then you will have your choices in writing no matter what happens, since life has its own set of uncertainties. The wishes you express now can always be updated whenever your health status or your preferences change.
2. Choosing the wrong healthcare proxy
Naming a person to make health care decisions for you in case you cannot speak for yourself is one of the most important steps in the process of advance care planning. But it is essential to choose the right person for this responsibility. Remember that some friends and family members may be too overwhelmed with their own grief or guilt to advocate for your wishes as you reach the end of your life.
You should choose as your proxy someone you trust who is emotionally strong enough to stand up to pressure from the medical system or loved ones in order to protect your wishes. This person also should either agree with your choices or be supportive of your right to choose in order to advocate for you. Finally you should consider whether or not the person is both willing and able to represent you now and in the future.
3. Getting lost in the details
When planning ahead for future health care decisions, it quickly becomes obvious that there are millions of potential scenarios that could play out at the end of your life. You could spend months considering every possible circumstance and making decisions for each situation, but that would be an unfortunate waste of your time.
Instead of getting lost in all the possible details for the future, ask yourself simple ‘big picture’ questions like “What do I want it to be like when I die?” By starting at the end, you can work backwards and other decisions will become more apparent. For example, if you wish to be in your own home when you die, then you will want to avoid types of treatment that would require hospitalization during your final days.
4. Not discussing your plans with your doctor
A large study found that even when patients had taken the time to complete advance directives only 25 percent of their physicians knew that the documents were on file. Your health care wishes are not likely to be carried out if your doctor doesn’t know what they are and cannot access your paperwork.
Schedule an appointment with your treating physician to talk about your end-of-life preferences and to ask for input. This will ensure that three factors of effective end-of-life planning are met: you will have the information you need about your health status in order to make decisions, your doctor will know what you want and will also know where your directives are stored.
5. Not expressing your wishes to your loved ones
The survey conducted by The Conversation Project showed that while 90 percent of Americans believe it is important to discuss their end-of-life wishes with their loved ones, less than 30 percent have actually had these conversations. This lack of information can cause distress and anxiety for family members at the time of a loved one’s death as they are forced to make difficult decisions without having a basis for them. Also many families have been disrupted at the time of a loved one’s death because members have been told different things at different times by the patient.
Plan a time to talk to all significant members of your inner circle about the healthcare decisions you have made, preferably at one time so that everyone hears the same information. Also give a copy of your advance directive to each person and make sure they understand what it says and why you’ve made that decision.
6. Not updating your end-of-life preferences over time
Everything changes in life and your choices are also likely to change as you grow older and encounter new health challenges. It is important to regularly revisit the end-of-life plans you made in the past in order to ensure that they are still the right fit for your current situation.
Consider reviewing your advance directives at least every 5 years while you are younger and still healthy. You should update your documents whenever you experience a change in your health status and then review them annually from that point on.
The evidence seems clear that if you do complete your advance directives and avoid these six common mistakes you are more likely to have a peaceful end-of-life experience that honors your preferences. The time you spend now to do this planning and in the future to stay up-to-date will be worth it when you can meet your last days surrounded by love and content with a life well-lived.
As you consider your wishes for the end-of-life you might seek out guidance from books, articles or online sources to help you complete your advance directives. There are numerous options available including a free 10-day challenge you can sign up for to get all of your paperwork done with support and encouragement by email.
Remember to start your planning right away, make your best choices based on what you know right now, stop worrying, and spend your time loving the people in your life!
First, thanks for the valuable guidance. You and many others writing on this and related subjects refer to keeping “your doctor” informed of your wishes. I am 78 and see a family doc annually for physicals only, and his online medical service link is one of three I must go to for my gastroenterologist, urologist, dermatologist, etc. If I have an emergency health event requiring hospitalization, I have no idea who will be the attending doc. My family doc has my advance directive in my online file, but should I keep an emergency 3-ring binder of key paper documents by the front door?
Thank you for the advice. I wonder if persons with dementia need something in addition to what you wrote about. I mention that because my mother completed those steps and her end of life was unreasonable. She had Lewy body dementia. Thank you.