Our Mortal Fear of Death

For most of us, our reluctance to face and discuss end of life is tied to innate fear. Just thinking about my death causes emotional pain. Not only are we hardwired to avoid pain, but we also steer clear of what we think will cause pain. Given that, it’s no wonder that we would put off thinking about death let alone planning for it, as long as possible. So long, in fact, that many of us reach end of life without having made it clear what degree of lifesaving measures we’d prefer.

The most distraught deaths that I participate in are the result of poor communication and planning between family members prior to a current hospitalization. If you could see and hear for yourself, just once, the debilitating guilt and remorse that family members struggle with regarding “not knowing what to do,” I believe that you’d have The Conversation with your family and complete an advance directive in no time at all.

So, I invite you to “fast forward” to the end of your life and to imagine how it might go. Where would you be? Who would be with you? And how much life support would you want? Imagine that you have a say in how it will go. You do. Your willingness to think about this ahead of time, and to express your fears and preferences to those you trust, is the most straightforward way to minimize undue fear and suffering. It may take some time to think it through, but it will be time well spent.

An Environment Fraught with Urgency 

I work as a chaplain in one of the busiest Emergency Departments in our country.  The department hums with a taut readiness. Highly skilled frontline clinicians, whose roles are identified by varying colored scrubs, fight off weariness to meet the demands of each twelve-hour shift. Their efforts to respond, assess, stabilize, and comfort are nothing short of heroic.

I find few things more rewarding than offering emotional and pastoral support to patients, family members and to our staff. On the other hand, few things are more distressing than when a seriously ill patient arrives by ambulance, lacking written orders or the forethought to avoid aggressive and often futile lifesaving efforts. The inevitable distress for all involved is not only palpable, it’s avoidable.

“Quick, Call 911.”

Our death-denying culture does not let go easily. Currently, half of all Americans reaching the end of life are brought by ambulance to a hospital emergency department in the last month of life, seventy-five percent of whom are then admitted for an extended stay. More than one million emergency calls a year bring these late-stage patients to the hospital, often because their families don’t know what else to do or because they are unwilling to accept that death is fast approaching. Many of these patients and their families are unaware that the end of life is even at hand.

When the EMTs arrive on the scene, they are legally and honor-bound to attempt resuscitation and provide life support. The notable exception: when there is a “POLST” document or an “out-of-hospital DNR” prominently displayed or immediately available. For lack of this, many terminally ill patients end up in the emergency department on life support, even though they had an advance directive instructing otherwise.

Physician’s Orders for Life Sustaining Treatment (POLST)

If your advance directive is sitting in a drawer at home, as thorough and well-crafted as it may be, it WILL NOT be effective in an urgent situation. Many clinicians view the Physician’s Orders for Life Sustaining Treatment form (POLST) as an essential and more useful tool to minimize undue suffering. Note well: a hard copy is intended to travel with us from one care setting to the next, in addition to being scanned into our electronic medical record.

If you’re living with advanced or chronic illness, ask your primary care doctor or attending physician at the hospital if completing a POLST form would be appropriate. To emergency responders and hospital clinicians, it’s the most recognizable, efficient, and effective way to communicate one’s treatment preferences. It’s standard practice to print it on bright pink paper. First responders are bound by law to resuscitate unless a POLST or DNR form is in clear sight. Best practice: Tape a bright copy to your refrigerator or bedroom wall.

Cardio-Pulmonary Resuscitation (CPR)

As highlighted in last week’s Post, CPR doesn’t work as well as Hollywood would have us believe. It works best if you’re healthy with no underlying illness, and best if it can be given within minutes of when your heart or breathing stops. CPR does not work well if you’re older and weak, if you have chronic health problems, or if you have an illness that can no longer be treated. In such a condition, there is a two to three percent chance that CPR will restart your heart and lungs and that you will leave the facility alive.

The time to decide if you want CPR is when you’re well and have the facts you need to make an informed decision. Ask questions and talk to your doctor(s) and loved ones. If you want CPR, it would be good to understand what results you could expect given your age and condition. What would your goals be? What quality of life would be acceptable? Or unacceptable? If you don’t want CPR, you need to tell your doctor and your family and have it documented.

What would lead me to have my agent decline CPR? Some examples: if I could no longer breathe without a machine; if I could no longer think or talk; or if I could no longer recognize my loved ones.

Moving The Conversation Upstream

The most effective solution to de-escalating the physical and emotional trauma of a late-stage transport to the emergency department and the likelihood of futile aggressive treatment begins with earlier conversations between us, our primary care doctor(s), and our loved ones.

Your Choice: A Timely Call to Hospice… Or a Crisis Call to 911

To choose hospice is to reclaim the end of life as an essential human experience rather than a continuing medical battle. Hospice has shown me time and again that with skillful pain management, dying can be acceptable, let alone peaceful.

Learning what hospice has to offer and saying “yes” to its model of care is not likely to shorten your life. Extensive research and data show just the opposite. The early acceptance of hospice care not only leads to less suffering and more comfort, but longer life. It’s counter-intuitive but a fact.

Yet even with forethought and planning, to finally accept that life is coming to an end is hard work. Unfortunately, most people wait long into their illness to learn about hospice and to accept what it has to offer. As a result, nearly thirty percent of hospice patients are referred in their last week of life, usually following a fretful call to 911 and a trying hospital stay.

Hospice care is now available coast to coast in most every hospital, continuing care facility, and private home. No matter the setting, personalized, attentive care focused on quality of life is good medicine. Its availability waits on our willingness to accept that a cure is no longer possible and that further treatments may compromise whatever quality of life remains. Ideally, hospice gives a patient time to decide what a “good death” might look like, and then to rally the loving support of family, friends, and a dedicated care team.

Next Week’s Post: “Family Caregiving”

It’s not unusual for caregivers, when providing for a loved one at home, to become afraid that they’re not doing enough or become uncertain of what’s taking place and what to do next. An important part of hospice care is normalizing what’s taking place. Learning more about the natural process of dying will alleviate much of the fear. Hopefully, this kind of support and reassurance is just a phone call away—ideally to your hospice team, not 911.

 

A Medical Advice Disclaimer

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,

DSW