After the Camera ran last week’s column, “End of Life, Part 1,” I was deeply moved and gratified by the many responses I received from readers. Many of them told personal stories — some positive, some disastrous, all heartbreaking — about complications at the end of life for someone they love.
I heard about horrible situations in which medical personnel, for whatever reasons, refused to honor the patient’s and the family’s wishes to withdraw treatment. I heard from one who told the story of her beloved brother, who was on a ventilator but fully conscious — and who instructed his family, via eye blinks, to allow him to die in peace.
Other readers were astonished to learn that, unlike on TV, CPR rarely works and typically results in painful injuries.
And if there was a thread running through them all, it was simply that they want to know more about how, if possible, to ensure their wishes will be honored when the time comes for them to die.
To that end, I was privileged to interview Kim Mooney, director of community education for HospiceCare of Boulder and Broomfield Counties, one of the oldest hospice organizations of its kind in the United States. Kim has been working to educate people about end-of-life issues for decades, talking about the critical importance played by communication when it comes to expressing your wishes.
But when her mother died recently, that message really came home for her. Unlike most of us, Kim’s mom had talked to her family about her wishes over the course of a lifetime. When it came time for her children to come together and make medical decisions for her and talk about quality of life, “we knew exactly how to treat her and support each other. There was some kind of sanity in the middle of difficult choices.”
Her mother, by nature cheerful and upbeat, was wise enough not to be in denial about the certainty of her death one day. And so she talked about what she wanted all along, knowing “it was going to be part of what we deal with,” Kim says.
And, of course — after all, Kim was both her daughter and an expert — she made sure she had written her wishes down in black and white.
“She taught me a lot about how I want to die,” Kim says.
So: How would you like to die?
There are two things you should be doing to make your friends, family and medical team aware of your wishes:
Make sure you’ve completed two key documents, the Medical Durable Power of Attorney for Healthcare Decisions and an Advance Directive for Medical/Surgical Treatment.
But don’t let it stop there. Make sure you have comprehensive conversations with all who might have to make decisions about your care, explaining carefully to them your values and your wishes.
(There also is a new form, but it’s targeted at a narrower category of patient, the Medical Orders for Scope of Treatment, or MOST. I’ll address that below.)
“We can never say 100 percent that this will work,” Kim says. “But doing this will close a lot of gaps, especially if you have been clear with people.”
The durable power of attorney allows you to designate the person who will make decisions on your behalf should you be unable to. It’s important not only that your health-care agent be informed of your values and wishes, but also that you notify family members of your choices and be sure that they know how you want to be treated.
“Everyone who is over 18 needs to do this. It’s a simple form but it requires a serious commitment to self-reflection and good communication. However, you don’t need a lawyer to complete one which is one of the reasons many people delaying completing one,” Kim says.
The Advance Directive for Medical/Surgical Treatment, once known only as a “Living Will,” now allows you to give clearer directives to your care team regarding when and if you’d like artificial nutrition and hydration withdrawn or what to do if you are in a “persistent vegetative state.” But the form encourages you to go far beyond that by attaching further directions: Do you want to be in hospice? Do you want antibiotics, blood transfusions, dialysis?
“All these choices should be based on thought-out conversations with your family, based on the essence of you and what you consider to be quality of life,” Kim says. “The whole thing is underpinned by what your values are: Is it important for me to stay independent, meaning I don’t want someone to have to clean me? Do I want to be able to hold my grandchildren?”
Because there are many misinformed people and politicians willing to use the issue for demagoguery, some are uneasy about all this, thinking if they don’t opt for “everything,” they’ll die in pain. But as Kim says, comfort, respect and palliative care are always a given, regardless of your choices.
The MOST form is an important new physician’s order, but it’s not for everyone. It’s designed for “patients in motion” — the terminally ill, frail elderly people, patients who are more likely to be in frequent contact with doctors — those with immediate and serious medical concerns. It is a “CPR directive designed to follow the patient around in every setting, including an ambulance,” Kim says. In Colorado, the form is bright green so hopefully it will be immediately visible when it is needed.
With the MOST, you can request not to be put through a (likely painful and futile) attempt to resuscitate you, given antibiotics or placed on a ventilator. (Or, if you choose, you can request all those interventions — it’s up to you.)
Through HospiceCare, which is deeply invested in community education, Kim has spent two years educating doctors, emergency personnel, nurses and the public at large about how the MOST works. Like the forms intended for the general population, MOST can — and should — spur conversation.
Even many doctors have traditionally been reluctant to engage in conversations that acknowledge the reality of death. But, as Kim says, “If you think it’s hard to talk about the end of life now, guess what happens when you don’t?”
To download the most current Medical Durable Power of Attorney and Advance Directive forms, you can go to irisproject.net.
On May 5, HospiceCare of Boulder and Broomfield Counties will present a free five-hour training on how to prepare your end-of-life documents and open up conversations with friends, families and medical personnel. For more information, call Kim Mooney at 303-604-5214 or email her at firstname.lastname@example.org.