Wouldn’t You Rather Have a Say?


WHEN IT COMES TO HOW WE DIE, there are only two ways to go, either fast or slow. Statistics have it that 85% of us will die slowly, and if we choose to, can have a say in how and where we die. To recognize and embrace this truth is straightforward. Wouldn’t you rather have a say?

In last week’s Post, my dad made it to clear to his family, years in advance, that he wanted to die at home. We heard him but had little idea how his final chapters would eventually play out. That’s normal and to be expected. Dad’s preferences, our loving care, and the healthcare system, each conspired to support him in having his say. It all unfolded in real time. Truth is, if he hadn’t expressed his wishes, it would have gone differently.

The Three Main Settings in Which We Die

Other than experiencing a sudden and traumatic death, there are three primary places to die: the family home where we live, the hospital, or a care home. When asked about their end-of-life wishes, most people (80%) say they’d prefer to die at home and avoid overly invasive measures. Yet currently two out of three deaths in the U.S. (70%) occur in institutional settings. One in three deaths occur after a stay in the intensive care unit in the last three months of life. You see the situation.

Home Versus the Hospital

When we’re healthy, it’s normal to idealize the notion of being kept comfortable and dying peacefully at home. When we’re terribly sick, receiving intravenous medications or needing help breathing, the hospital is a safer bet. Where we receive care depends on the trajectory of one’s illness, and how aggressive we choose to be in “battling” a terminal condition. It’s essential to talk with our medical team early on, and to learn what the normal course of our illness might look like. Armed with good information, we’re better equipped to make informed decisions, and to choose a path forward, including where we’ll get the level of care we’d prefer.

For caregivers, most of us underestimate the demands of providing quality care at home. It’s also normal to overestimate the number of caregiving hours that hospice or home health can provide. “It takes a village” to die at home. This requires foresight and teamwork. Despite the inevitable challenges, taking care of family members at home stands out as one of the most profound and formative experiences of my life.

The Hospital and Healthcare’s Systemic Default: A Conveyor Belt

In the face of irreversible illness, the purchase of additional time has a shadow side. In her compassionate yet chilling book, Extreme Measures, ICU Intensivist, Jessica Nutik Zitter, MD, helped us recognize and take stock of how the hospital’s systemic “end-of-life conveyor belt,” once entered, can be difficult to step off.  From admission to discharge, a well-oiled and highly profitable system is driving the conveyor belt. This is our healthcare system’s default setting. Here’s where the need for clear communication and shared decision-making is most pressing.

The hospital wanted to send dad to “Rehab.” It was presented matter-of-factly, as the path of least resistance, the normal “next stop.” This referral system to the next level, next test, next treatment, etc., is deeply ingrained. Now is an ideal time to learn about healthcare’s relentless forward motion and to consider how and when to hop off the beltway.

The “pause” of a family conference, and the value of previous experience combined with our advocacy, applied the brakes. Our familiarity with hospice and general knowledge of the hospital’s referral system, which fall under the heading of “healthcare literacy,” (Next Week’s Post) allowed us to find an off-ramp. Our ability to talk with dad’s doctors as consultants, rather than authority figures, made the difference.  Our conversations were honest, relatively brief, and free of charge.

Moving from Fear to Acceptance

It’s normal to fear what we don’t know. In the face of uncertainty, a simple remedy is to slow down and for patient and family to ask good questions. To gain information is to gain a semblance of control and “say” over a difficult situation. The benefit lies not only in the present, but usually lasts for years, when a family reflects back on how it went for their loved one. My dad’s hard work toward finding acceptance, and communicating it, not only lifted his spirits, but ours’ too as we cared for him.

Taking Responsibility to Think Ahead, to Plan, and Prepare

What are the most important decisions? And when do they get made? I think the lynch pin is in realizing that we have a say in our care. Then learning about our condition and treatment options, and talking openly with our doctors and loved ones about what’s important to us. It’s essential to remember that no matter what we say, plan or even document, we can pivot and adjust in real time as our condition changes.

The Value of Advance Care Planning

As mentioned in previous Posts, these conversations fall under the heading of Advance Care Planning (ACP). When it comes to ACP, the trend is moving away from checking boxes on a form, toward honest, straightforward discussions about “what’s matters most,” and how much I’m willing to give up (or put up with) to gain more time. ACP ranges from my dad’s simple request to “only leave home in a box,” to a highly detailed Advance Directive, spelling out a litany of personal wishes in response to various scenarios. The choice is ours. The key is to begin.

Choosing “Your Person,” and Preparing Them to Advocate for You as Needed

Eight out of ten of us will need a trusted spokesperson at some point during advanced illness. The value of identifying that person, and preparing them to advocate on our behalf, cannot be overstated. Often referred to as our Agent or “Proxy,” the key is to establish a trusting rapport with this person through a series of conversations that explore and establish our values, preferences and concerns surrounding end of life. Steel yourself to hear, “We don’t need to talk about that yet, do we?” The simplest answer: “It would mean a lot to me to at least begin.” The goal: to make these conversations not only comfortable but routine.

Routine? Really?

It may be a “moon-shot” goal, but it’s worth aiming for. Family communication and quality end of life care go together. Initially the topic is unfamiliar and therefore often uncomfortable. Yet, the more we initiate these discussions, the more “normal” they become. As an example, not many 40 year old’s talk about going to the doctor. But spend time with an average 80-year-old, and “doctor talk” is not only inevitable, it can be relentless. The pivot point is to use these discussions to clarify what a person wants when they aren’t going to get better. The more routine these care conversations become, the more likely that our care will match our preferences.

The Importance of Real Time

You’ve heard me say this before: Everything takes place in real time. Planning and preparation are important. They take place in real time. Then someday, most of us will be stricken with serious illness, which will also unfold in real time. While this will be upsetting, it will be less of a shock if we’ve gotten used to talking about such things with our doctors and family.  It’s difficult to anticipate and prepare for all possible scenarios. Please trust yourself, your healthcare agent, and your doctors to talk and make joint decisions, in real time, that most faithfully represent your wishes.

Learning to Talk with Our Doctors

It’s good to begin talking with our Primary Care Doctor, who hopefully we know and trust. That way, when we’re in a hospital setting, with a new and unfamiliar team, we’ll have some experience and clarity to draw on. As mentioned before, we need to be honest and direct with clinicians, and to ask for and expect the same in return.

Next Steps?

The most humane way to die, whether institutionalized or at home, is to prepare for it as we would any significant life event. Beginning where we are. Recruiting help. Then bringing our experience, understanding, and hard-earned wisdom to the task at hand. There’s no better time to start than now. On your mark, get set, go!

Next Week Post: Healthcare Literacy (What is it? How do we develop it?)



The content of this blog is for informational and educational purposes only. No aspect of its contents is intended to substitute for professional medical advice, consultation, diagnosis, or treatment. The author is a spiritual care provider, not a doctor. Always seek the advice of your physician or other qualified health care provider with questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen. Never disregard professional medical advice or delay in seeking it based on something you have read here.


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‘Safe Journeys, until next week,