Reflections from the Bedside

by Charlene Thurston, RN, ANP, Program Director, from the Fall 2017 Currents Newsletter
Several months ago, I had the honor of being a Sunday guest speaker at the Unitarian Universalist Church of Nantucket and shared some of the many lessons I’d learned after my almost thirty years of working with patients facing life-threatening illness. Since several parishioners found the discussion valuable, I thought it might be of interest to all our readers.

People often ask me how I can do this work, especially the end-of-life aspects of our care. I actually came into this rather accidentally. When asked some years earlier whether I’d be interested in starting a hospice program, I’d declined, but, in 1982, when asked again, I was a few years older at age 33 and taking some time off to raise our daughter, so thought it would be interesting to get involved to develop a hospice program.

During the earlier years of our program, almost all our focus was aimed at care of the dying, and one of the things that I learned quickly when starting to care for terminally ill patients was that, in order to care for the dying and their families, one had to make peace with death. I learned that I had to do my own personal growth work, examine my own beliefs and values, and develop a personal philosophy or belief system that could sustain me, in order to stand with people who are experiencing intense suffering and help them through their experience.

Working with our patients and families is beautiful work, and being allowed into a person’s life during such an intimate time is truly a privilege. This is a time when our everyday masks are off, and when we’re much closer to connecting soul to soul, something few people get to experience in their everyday interactions with people. And it’s awe-inspiring.

All patients and families are different and all are remarkable in their own ways, and we learn and receive from all of them. This is a very reciprocal process; while we’re there to give (care), we also receive, even when things seem chaotic and difficult.

Some patients are at a place in their lives where they’re able to cope with their illness with equanimity, while others are so devastated by their fear of death that they seem to shut themselves off before their illness does, often becoming paralyzed in fear and anger and cutting themselves off from their loved ones, at a time when their loved ones are trying to reach out to help them or to join in their suffering. There’s nothing sadder than to see this withdrawal and one of my strongest messages to people is to humble yourself enough to accept help from those who love you. This is a gift you can give them.

Witnessing the difference in how people cope with these diagnoses, I’ve come to suggest to all people that they start early, while they’re well, to explore their own beliefs and values and philosophies about life and death; that they do their own spiritual search, re-visiting their own religious and spiritual beliefs, so that when the time comes that they’re faced with their own illness or the illness or death of someone they love, they’re better prepared to cope. We will all face death and we will all face the death of people we love. Start to build the foundation for what will sustain you early if you can.

People with life-threatening illness and those of us who work with them often find that they develop a much more intense appreciation of what really matters to them in life. They re-prioritize what’s important, and learn to let go of what really isn’t. Realizing that each day could be your last (which should be something we all realize) informs how you live.

Living one’s life authentically becomes so much more important; letting go of the “shoulds” and staying true to who you really are, not what other people want you to be.

Reconciling relationships; seeking and granting forgiveness, including forgiving ourselves.

Saying the things that matter most. Dr. Ira Byock, a leading physician in the hospice movement, states in his book, The Four Things that Matter Most, that, in completing relationships, the things that matter are saying, “I love you”; “I’m sorry, please forgive me”; “I forgive you”; and, “Thank you.”

Accepting what is. When there’s nothing that can be done to improve a situation, our wisest choice is to accept it and to re-direct our energy toward making the most of it vs continuing to fight against it.

Welcoming everything; pushing away nothing. Frank Ostaseski of the Metta Institute, a world renowned leader in the field of end-of-life care, teaches that all experiences, positive and negative, are of great value in teaching us the lessons of life, helping us cope, and growing through situations that we otherwise might avoid.

At the end of the day, or at the end of a life, we want to know that our lives counted for something, that we mattered, that our lives have had meaning. Much time is spent in life review and reminiscence as we try to take stock of who we’ve been. What matters most to people is not what they’ve accumulated, but whom they’ve touched; whom they’ve loved and been loved by.

Our work is to help our patients and their families get through their experience, whether it ends in cure or death, with as much comfort and equanimity and growth as possible.

Dame Cicely Saunders, founder of the hospice movement, has a very famous quote: “You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.” We, at Palliative & Supportive Care of Nantucket, try to live by those words.

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