By Dianne Bein, MSN, FNP-BC, ACHPN, Program Director/Clinical Manager – from Currents Fall 2019
Upon reflection of my first year with PASCON, I am reminded of the many changes we have experienced and the opportunities that have emerged from those changes. We are thriving, but also experiencing some mild growing pains as a result. We have added a staff member, and the PASCON Board is developing a new 5 year plan. We are looking at the direction of healthcare in general, and we are examining how PASCON can develop programs to increasingly meet the needs of our
island community.
We will soon move into our new home on the hospital campus – not inside the beautiful new facility, but nearby in our own thoughtfully designed space in the Anderson Building, where renovations are currently underway. We are creating, in partnership with the hospital, an environment that is homelike and comforting, so we can carry on our work of serving the Whole Person – mind, body, and spirit. There we will be able to serve our patients, train our many volunteers, and develop new programs that many of you have requested.
One of the highlights of my first year here has been bringing the Rev. Dr. Gloria White-Hammond to the Island. I would like to share a little bit about the purpose of her visit and why the type of change she specializes in is so important for all of us.
Dr. White-Hammond is both a Medical Doctor from Tufts and a Doctor of Ministry from Harvard, with her own 500-member congregation in
Jamaica Plain. Because of her unique background, she can speak to palliative and EOL (end-of-life) care as both a physician and a minister, and she does just that with palliative departments across the country. She also teaches at Harvard Divinity School.
The initial purpose of our invitation was to train the Nantucket clergy and their active lay members on the Nantucket Interfaith Council to help individuals in their own congregations in planning ahead for their EOL care. The two-hour meeting eventually morphed into two meetings over three days that included medical and nursing staff at NCH and an interview on the Frank and Mary on Nantucket cable TV show. Our guest talked about the “Conversation Project,” a national public engagement initiative with a goal to have every person’s wishes for EOL care expressed and respected.
We knew that the need for better EOL planning here on Nantucket, as elsewhere, is great, but her focus underscored my struggles as both a nurse practitioner with my patients and as a daughter with aging parents. I believe that I, along with my colleagues, have a responsibility to discuss what is happening as we watch our patients, parents, spouses, and our own bodies inevitably age. Yet, few of us ever ask the necessary questions related to aging, illness, and mortality.
I have been unsuccessful in my own attempts to speak to my 90-year-old parents over the last few years about their wishes and desires for EOL care. Several years back I had carefully selected a stack of prepared papers and timidly sat down with them to inquire about their wishes – presenting materials like Five Wishes, MOLST forms, Advance Directives, and everything else my social worker colleague could put together for me to help them plan for EOL care. But my parents were not ready to talk about a time when they would no longer be able to care for themselves. It seemed to them that this time would never come.
Why didn’t I insist, push a little harder, empathize with them about loss and hard decisions, and then persist? Now I find myself making decisions for those who have historically made decisions for me! And I am sad for them. Why hadn’t they told us what they wanted for these final years? Or better yet, why hadn’t we insisted they prepare us? Why did none of us ask these difficult questions years ago when our parents were clear-headed and empowered, rather than frail, unstable on walkers, and often forgetful or confused?
What’s worse is that I find myself struggling to put my own EOL choices on paper through an Advance Directive. I’m not sure exactly why, since I don’t like uncertainty, and I’m typically all about being in control. I’ve never been comfortable when others speak for me, yet why would I hand off these consequential decisions to others?
It seems I’m not alone. According to recent data, more than 90% of us say talking with loved ones about EOL care is important, but only one quarter of us have done anything about it. Although 7% of us have had an EOL conversation with our physician, NP, or PA, fewer than 25% have put our wishes in writing, even though 82% of us say it’s important. Where is the disconnect?
As each of us grows older, most of us say we want to retain control over our lives. When we let fear or anxiety stop us, we’re shifting the responsibility to others we love. We are actually making a decision by default, that these are the ones who will one day make those tough decisions for us. Experts say we are delaying the inevitable because Advance Directives are difficult, and it hasn’t been part of our culture. Yet, as one Forbes article points out, we plan for everything else: marriage, kids, vacations, travel, major purchases, and retirement.
None of us want to face the end of our lives. The Dad I love has diffi-culty accepting that he may not live another 10 years to 100, as his grandfather did, despite failing kidneys, difficulty walking, and frequent trips to the ER where staff know him by name. I never want to take away hope from my patients or from my dad. Being human has a 100% mortality rate, yet we as humans are not great at accepting that mortality.
For many of us, death is frightening and final. For others with religious or spiritual beliefs, hope lies in something more to come. But none of us can know. What we do know is that whatever comes next is different than the present and we are most fearful of the unknown. Most of us are also good excuse makers and procrastinators. It’s much easier to take the Scarlett O’Hara (Gone with the Wind) approach and “think about it tomorrow.”
We may put this matter off because we think we’re too young, too busy, or will always have tomorrow. Perhaps we don’t want to “tempt fate”. Or we wait for our trusted physicians to bring up the subject, while they’re waiting for us to do the same. What that leaves behind is a legacy that makes the lives of our loved ones so much more difficult and often traumatized.
In cases where no Advance Directive existed, several survivors have told me that they continue to feel great anxiety, many years after the death of their loved one – not because they believed they had done something wrong, but because they didn’t know if they had done something right.
No one forces us to face these EOL issues. While questions about EOL are becoming more commonplace in hospitals and medical offices across the country, we have a long way to go. Many practitioners don’t want to have that tough conversation, and patients are happy to avoid it as well. It takes time and schedules are full. It’s also uncomfortable and can be awkward. It puts our mortality at center stage and we are forced to look it squarely in the eye. As humans we avoid psychological pain at every turn. Many providers fear that EOL discussions will cause their patients distress. If we are asked often, maybe we will eventually get the message that this really is important, and especially so in a culture that’s not comfortable with death as a part of life.
Regardless of why we put these decisions off, it’s important to begin the process. It can be done in stages and we can remind ourselves that this is not really “all about me.” By facing our fears, we are making our own decisions and taking this burden off our families. It is never easy, regardless of our age, but it’s our right and responsibility to do so.
As my adult children see me struggle with the care of their grandparents, I reassure them that this will not happen to them. I will tell them exactly what I do and don’t want at the end of my life, while I can still make clear decisions. There will be no divisiveness or ani-mosity where my children disagree about what they think I want. I owe them that.
As we remember those who are no longer with us during the holidays and enjoy the company of those who are, my hope is that those of us in that 75% will begin the process of planning ahead. EOL planning relieves the burden we might otherwise put on loved ones, while also giving us the dignity and peace we all deserve at the end of our lives.
I look forward to the reflection and celebration that this season brings, and to the promises, opportunities, and changes we will welcome in 2020!