Organizations That Cater To The Dying
Machines blaring the electronic rhythms of life hang in the balance. Physicians and nurses whirl in and out. The desperate urge to focus on memories of times past gives way to a frenzy of questions and fears about an uncertain future.
When someone you love faces an end-of-life crisis, the last thing you want is to help them make last-minute decisions about their care. Do they want to be resuscitated should they experience cardiac arrest? How long do they want to be kept on life support if things take a turn for the worse? If the end is imminent, would they prefer to stay in the hospital, go to a care facility, or have hospice care at home?
It’s easy to see why all of these decisions should be made before a crisis hits, but according to a Health Affairs study, only about one-third of Americans have completed an advance directive. That means two-thirds are avoiding important decisions about one of the most critical stages in life, which is likely to complicate an already complicated situation.
I’ll admit that I’m among the two-thirds―and I should know better. I’ve been through the agonizing experience of watching a loved one face end-of-life care. I’ve seen the questions that arise, the subtle discrepancies between what family members think is best, and the tough calls that have to be made. But I’m afraid I’d rather procrastinate it all and focus on the day-to-day—family, work, gym, what’s for dinner—rather than imagine what course I want physicians to pursue if (when) I find myself on the brink.
For The Last Few Years
In Utah, a collective of organizations are helping healthcare providers and policymakers make headway in navigating the passage from life to death. That’s why Comagine Health created www.leaving-well.org, a website now maintained by the Utah Hospital Association dedicated to walking Utahns through all aspects of planning for end-of-life care.
“The website is really to ensure that people in Utah have the opportunity to live well to the end of life. That’s where the ‘leaving-well’ name came from. We wanted to focus on sharing their conversations about end-of-life goals with their healthcare provider, empowering them to make this conversation easier,” says Deepthi Rajeev, director of Utah patient safety and innovation for Comagine Health, a national nonprofit healthcare consulting firm.
Beyond its support of the website, the Utah Hospital Association is adding its expertise and energy on several fronts. “There’s very little dialog in the public policy arena on how best to help citizens through end-of-life care. We’re looking at things we can do either at the funding or state law level to improve things,” says David Gessel, Utah Hospital Association executive vice president.
“We’re also encouraging and innovating with our members—not just hospitals, but also nursing homes and other folks who do this—finding ways to train physicians better to help families have the end-of-life care they want. Our third focus is on public awareness—the vast majority of citizens still don’t think about this until it’s right in front of their face.”
“These are difficult conversations that are not easy to have,” explains Rob Ence, executive director at the Utah Commission on Aging. “We want individuals to be able to express what their desires would be, the values and priorities they have for their own end-of-life choices. Ultimately we want a system that allows that individual to weigh in as much as possible about what happens to them. Who gets to choose is a really big deal. People also need information on outcome and cost choices as they walk through this step—32 percent of Medicare dollars are spent in the last two years of life. The last thing we want is to have unwanted medical treatment that is costly and the quality of life is not enhanced.”
Dr. Rajeev adds, “We really need to be looking at it from a multifaceted approach. We need to train the providers to be empowered to have these conversations. We need to be giving the patients and caregivers the resources as well, so they are prepared to engage in these conversations.” On the caregiver note, she cites a study that says, “40-70 percent of the caregivers have clinically significant symptoms of depression when they are in the act of caregiving. When they are aware of what their loved one wants, that helps alleviate the caregiver as well.”
For The Last Few Months
Since 2015, another option for end-of-life care has been proposed in the Utah legislature, first by Rep. Rebecca Chavez-Houck, and this past session by her successor, Rep. Jennifer Dailey-Provost. The Utah bills are similar to what other states in the US have passed, supporting physician-assisted dying, an effort that statistics say, seven in ten Americans support.
According to the Death with Dignity organization’s website, this option “allows certain terminally ill people to voluntarily and legally request and receive prescription medication from their physician to hasten their death in a peaceful, humane, and dignified manner. Death with Dignity is governed by state legislation.”
“For us, it’s all about dignity and autonomy,” says Peg Sandeen, executive director at the Death with Dignity National Center, based in Portland, Oregon. “Modern medicine has brought tremendously positive things into our lives. The challenge is for a certain small number of individuals, modern medicine has extended the dying process to where the suffering is great. Death with Dignity provides an end-of-life care option that if they choose, they can stop their suffering if they qualify.”
Ms. Sandeen points out that qualification is key. The requirements are strict, including being a resident of a state in which this is legal, receiving a prognosis of fewer than six months to live as confirmed by two physicians, passing a psychological evaluation to confirm mental competence to make the decision―Ms. Sandeen explains issues like depression or dementia would disqualify an individual―and self-administration of the lethal prescription when the time comes.
Rep. Dailey-Provost says of the issue in Utah, “I’ve seen a majority of Utahns do approve of a very measured step toward policy like this, but by and large the legislature does not. I realize it’s a long stretch, but the example I like to use these days is the hate crime legislation that just passed in the 2019 session with strong support in both chambers was run initially 17 or 18 years ago. The reason we finally got it passed almost two decades later was because representatives or senators continued to push for legislation. If we don’t run this bill, if we don’t have those conversations, we’re never going to get there.”
For The Last Few Hours
End-of-life care often includes family and friends, but for some, healthcare needs might require individuals to be away from loved ones. For patients who do not have friends or family nearby and who are expected to die within three days or less, the University of Utah’s No One Dies Alone program provides a companion to walk with them through their final hours. Volunteers read, play music, or sit quietly, whatever feels best.
“It’s a sacred gift to sit with a patient as they’re dying,” says Brian Zenger, co-director of the program. “We really value the experience, and really value the impact we could have in being compassionate companions.”
How To Prepare In Advance
No matter how we face our final moments, it would clearly bode well for all of us to plan our end-of-life care ahead of time, communicate our wishes and work closely with physicians, so that our farewells are filled with as much peace as possible.
Perhaps the easiest place to start is downloading the recommended Utah Advance Directive Form & Instructions found at www.leaving-well.org. The form itself is just four pages, and the several pages of instructions preceding the form walk you through the otherwise hairy stuff. Another helpful resource (which includes the same four-page directive and a questionnaire to help you weigh where you stand on all that hairy stuff) is provided by the Utah Commission on Aging: Tool Kit for Advance Health Planning.
The tool kit covers the topics that are wise to start considering, including “Selecting Your Health Care Agent,” “Are Some Conditions Worse than Death,” “Personal Priorities and Spiritual Values Important to Your Medical Decisions,” and “Conversation Scripts: Getting Past the Resistance.” Maybe not your favorite dinner conversations to have with the family, but very important nonetheless.
The tool kit also makes a vital point: “Studies have shown that standard advance directive forms do little to influence end-of-life decisions without 1) informed, thoughtful reflection about your wishes and values, and 2) personal communication between you and your likely decision-makers before a crisis occurs.” Translation: think through everything, write it down, get it notarized (many resources say this is important), talk about it with your family, make it clear with your physicians, and continue the conversation should your perspective on anything change.
This is heavy stuff. But the load will be lighter for ourselves and those we care about if we pause long enough to plan for the end of our lives. Because as Mr. Zenger points out, “Something that’s important, that gets glossed over is the nature of death. It’s a lot like birth, the same emotions come up. It’s a beautiful time, a really trying time, an emotional time.”