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A member of the Most Worshipful Prince Hall Grand Lodge of Maryland walks by the casket of the late U.S. Rep. Elijah Cummings during a viewing service at Morgan State University last month. Many people don't have a plan for when they die.
A member of the Most Worshipful Prince Hall Grand Lodge of Maryland walks by the casket of the late U.S. Rep. Elijah Cummings during a viewing service at Morgan State University last month. Many people don't have a plan for when they die. (Julio Cortez/AP)

Death and dying is not something that most people like to openly discuss, but I suggest cozying up with your favorite beverage for a few minutes, because we need to get some important issues out in the open. Now, can I be honest about something? We are all going to die at some point in time — you, me, everyone around us and those who come after.

Our society is in denial about this, which makes it difficult to convince people they should actually prepare for it. I’m going to try anyway.

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Advance care planning is an opportunity for you to have a say in your health care treatment whether you’re facing an acute/chronic illness or a terminal illness, or even if you are perfectly healthy. According to the Centers for Disease Control, most people in the United States say that they would prefer to die at home, but only 33% of adults have an advance directive that explicitly expresses their wishes for the end of life. Speaking as a hospice nurse, the last thing I want is to provide care that is not aligned with peoples’ values. However, unless you specify what things are important to you, what you value, how you want to be treated, etc., health care professionals are obligated to provide every medical intervention possible.

There are several forms people can use to indicate preferences. The most comprehensive is the advance directive, which enables you to indicate your wishes for health care treatment and elect a surrogate decision maker, someone you trust to make decisions on your behalf should you lose the capacity to speak for yourself. AARP has free advance directive forms available online, listed by state.

This issue is more salient than ever, as 77 million baby boomers in the U.S. will soon surpass age 65, dramatically increasing the need for this specialized care and for health professionals who are adequately trained to provide it.

Last month, the Palliative Care and Hospice Education Act (PCHETA) passed in the House of Representatives and advanced to the Senate. The act’s goals are to expand the interdisciplinary palliative care workforce and to expand targeted training and skills development for that workforce.

The delivery of high-quality hospice and palliative care simply cannot take place without sufficient numbers of health professionals who are trained in this sphere along with evidence-based research to support care delivery.

A quick note: Palliative care is often misunderstood or thought to be the same as hospice, but they are two mutually exclusive forms of care. To clarify, palliative care is an interdisciplinary model of care that focuses on the relief of symptoms caused by any life-limiting illnesses, while hospice is care provided to those with an estimated six months or less to live. What they have in common is the maximization of quality of life. The National Hospice and Palliative Care Organization estimates that approximately 1.4 million people receive palliative care and/or hospice services every year.

Odds are pretty good you — or someone you love — will be among that number at some time. With that in mind, I have a few suggestions for your year-end to do list.

First: Have a discussion with your loved ones about your end of life wishes, and inquire about theirs, too. The winter holidays mean family gatherings for many. Why not shake up the table talk with death and dying?

Next: Complete an advance directive. Ensure that your family members and primary care physician have a copy. Then tell your friends. Set the example and they will likely follow suit.

And finally, take a minute to send an email or make a phone call to your senator’s office to encourage them to co-sponsor PCHETA. Help us push this bill across the finish line so we can provide even better care for those with serious illnesses.

I recognize that it is difficult to consider the end of life when we are so focused on the here and now. But we’re doing ourselves and others a disservice by putting these conversations off. You just never know what twists and turns life will take, or when. Now, go forth, and spread the message.

Katie Nelson (knelso46@jhmi.edu) is a hospice nurse and PhD student with interests in racial disparities in palliative care, decision-making and health care policy.

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