Death hardly seems the best subject for holiday dinner conversation, but Dr. Patricia Bomba insists upon it every Thanksgiving.
Some of her family members found it uncomfortable the first time around, but learned in the roughly two decades since that it’s better to have a good feel for what lies ahead, before family pressures build in the waning months, days and hours of a loved one’s life.
“Everyone 18 and older should begin to think about these issues, because anyone can face acute injury or illness and have the inability to make decisions,” Bomba said. “In that time, who do you trust to make decisions for you, and what’s important to you?
“It’s starting the discussion early, not waiting until people are in the ICU. Not waiting until people can’t make their own decisions and can’t convey what is important to them. At the end of the day, the planning helps. It helps families to be able to grieve and to recognize the circle of life. It also gives you an appreciation when you have these discussions, it’s not about death and dying, it’s about living.”
Ben Franklin long ago observed that death and taxes are the lone certainties in life, so it’s no accident that National Healthcare Decisions Day is Wednesday. The observation is designed to encourage Americans to complete an advance care plan that includes a health care proxy, living will and Medical Orders for Life Sustaining Treatment, or MOLST.
These tasks can be accomplished with help from the website CompassionAndSupport.org, a site fueled in large part by Bomba, 63, Univera Healthcare vice president and medical director for geriatrics, who also serves on the Institute of Medicine’s Committee on Transforming End-of-Life Care.
Nine of 10 upstate New Yorkers believe it’s a good idea to have an advance end-of-life care plan, but only four in 10 have chosen a health care agent, or proxy, Univera learned in a survey.
What do you need to get the process started?
You can get the information from one source, compassionandsupport.org. Because living wills really don’t work in an emergency, we’ve been pushing the health care proxy and looking at the MOLST form for those that are seriously ill.
If you come to the website, you’ll be able to see a whole section devoted to advance care planning, to MOLST, a description of life-sustaining treatment, pain management, palliative care, caregiver support and hospice. The whole framework is that this is important, just like financial planning and legal planning. Once you’ve done the advance care planning and people are getting older – especially if they’re getting sicker – they need information, and this is a hub of a lot of information. (Once on the website, click on Advance Care Planning, then CCCC Advance Care Planning Booklet to pull up a printable online copy, or order a booklet by mail.)
What are each of these forms designed to do?
For everyone 18 and older, the health care proxy is the primary one. It says, ‘I appoint you to make decisions if I don’t have the ability to do so and we have a backup in case that first person is not available.’ You can include what’s important to you, other instructions. You can say you have a living will. The health care proxy needs to be signed and dated, with two witnesses who are witnessing your signature. It doesn’t have to be notarized. It doesn’t have to be done by a lawyer.
On Page 14 of the booklet is a list, to be able to say, ‘These are the things I should be doing. I’ve thought about what is important to me, I’ve taken time to choose my spokesperson … it basically walks you through the steps.
The only people for whom MOLST is appropriate are:
• People who are in a nursing home.
• People who would be in a nursing home but are getting services at home.
• A provider or doctor wouldn’t be surprised if that person were to die in the next year;
• And people of advanced age who say, ‘There are things I want and don’t want.’
What would you say to someone who fears in their last days that they’re locked into something they decided when they were not in a critical stage?
That’s what MOLST is about. You don’t have a crystal ball. That’s the problem with a living will. You do a living will 20 years before and things change. With MOLST … you can make changes. It’s a dynamic process. When you have medical orders, they’re not locked in. They have to be reviewed regularly. Think process and not just the forms. Forms can be changed.
If you’re going to talk about this to someone reluctant, how do you do it?
I would talk from my heart about why it was important to me. ‘We’re going to be going through this at some point, so it’s best to be prepared.’ Each of us will go through this at some point in time. Talking about it doesn’t make it happen. Ignoring it doesn’t make it go away.
Can this help us all go on with our lives without being so anxious about the final outcome?
Absolutely. Doing this relieves the burden for families. Doing advance care planning and doing these things is a gift to our family and a gift to ourself. And by doing it, it keeps you in charge, because you have shared with the people around you what’s important to you and that helps to direct your care. When you share, ‘This is what’s important to me,’ the rest of the family can hear it openly without any of the conflict, ‘He said this’ and ‘She said that.’
On the Web: Read more about Dr. Patricia Bomba’s family talks at the Refresh blog here.