“Each of us is merely a small instrument; all of us, after accomplishing our mission, will disappear.”
- Mother Teresa
Early in my social work career I had the opportunity, perhaps responsibility, to sit down with a gentleman with advanced kidney disease and discuss the remaining days of his life. This conversation was one I have faced several more times in my career, but this one stood out. It stood out because I was asking this gentleman to decide if on Tuesday, he would attend dialysis. This moment was not just deciding if he would choose dialysis or choose to play euchre instead; it was deciding life or death. I discussed with this man that he was no longer healthy enough to make his twice weekly trip to the dialysis center. If Wednesday came and he did not have his dialysis, he would begin the process of dying. On Friday, my friend died.
As I sat and had this conversation, I cried. I cried because I knew what decision he was making and how quickly he had to make it. He was choosing to die or continue a life in which he had no joy. He was choosing a life of pain, discomfort, and restlessness. Ultimately, he concluded that his life was over. In just three days following the decision, his life would end. If faced with the same choice with my own mortality, would I choose to die in just three days? Would I think I had done enough in this life? Several years later, this conversation still haunts me, and I still wonder, have I given enough? Have I accomplished my mission?
Mission by definition is “a preestablished and often self-imposed objective or purpose.” As a non-profit CEO, I often think of mission on a macro scale focusing on what our organization’s purpose is and how it meets the needs of individuals in our community. I contemplate the words of our mission statement to ensure that everything the organization is doing is “mission-centric” or “mission focused.” Rarely do I contemplate this question in my own personal life. If given three days or three months left to live, what will I personally want to accomplish? What can I offer to my community with the hope to leave it just a little bit brighter?
No one likely thinks of my work, focused on end of life care and grief, and immediately thinks of brightness or joy, but I would disagree. There is something beautiful in death. There is something beautiful in having the time to face your own mortality. I have seen it. I have seen it in the faces of those who have an overwhelming peace about their death. I spoke with one gentleman in the last year who shared about how life is good amid a terminal diagnosis. He shared with me the value of learning he was on limited time and how being intentional with that time was important. He asked me to share his journey with those who were caring for him. He wanted to make an impact by sharing how much others meant to him. I have a suspicion if I would have asked him his life’s mission, he would have not seen himself as making an life-long impact on me, an entire organization, an entire community, but, in his final months, he did.
There is one major difference between these individual’s stories. One did not have the time to make intentional decisions about his impending mortality, while the other man had time to consider what he wanted his mission to be. He was able to use his words to describe how his journey toward the end of his life would go. While he was able to focus on the quality of the time he had left in life, he also had time to decide what kind of medical treatment he was willing to endure. Advance directives and advance care planning are incredibly important. They allow for each person to state their wishes about the end of life while facing a life-limiting illness.
Advance care planning is a process of communication between individuals, families, and healthcare professionals to understand, discuss and plan future healthcare decisions if an individual loses capacity.
[1] Whether someone is facing an acute illness, a long-term chronic illness or a terminal illness, advance care planning can help alleviate unnecessary suffering, improve quality of life, and provide better understanding of the decision-making challenges facing the individual and his or her caregivers. An advance care plan can be used at any stage of life and should be updated as circumstances change.
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Leslie Friedel
According to a study by the Conversation Project (2013), 82 percent of all people feel it is important to put their wishes in writing; however, only 23 percent of people have done it.
[3] Locally Aging and In-Home Services provides information for Honoring Choices which is a statewide initiative to advocate for Advanced Care planning. Advanced care planning focuses on four major areas, advanced directives, living will, power of attorney, and healthcare representatives.
“Advance directive” is a term that refers to your spoken and written instructions about your future medical care and treatment. By stating your health care choices in an advance directive, you help your family and physician understand your wishes about your medical care. Indiana law pays special attention to advance directives. Advance directives are normally one or more documents that list your health care instructions. An advance directive may name a person of your choice to make health care choices for you when you cannot make the choices for yourself. If you want, you may use an advance directive to prevent certain people from making health care decisions on your behalf.
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A Living Will is written, legal instructions regarding your preferences for medical care if you are unable to make decisions for yourself.
[5] In Indiana, a living will form should be completed before you need it because it becomes active when an individual has a incurable injury, disease or illness; death will occur in a short time; and the use of life prolonging procedures would only serve to prolong life. A Living Will addresses which life-prolonging procedure will be acceptable to an individual, such as, artificial hydration and nutrition.
A Power of Attorney is a document that authorizes another person to act on your behalf in specified matters such as financial decisions, health care decisions, or both.
Health Care Representative is the person you appoint to receive health care information and make health care decisions for you when you are unable to do so. This may be done through several documents including Advance Directive and Power of Attorney.
Throughout my career, in working with seniors and working with those that have a life-limiting illness I have seen families torn apart by making decisions for a loved one. I have also seen families focused on the time they have with their loved one because healthcare decisions were made, and they felt the peace of honoring their loved ones wishes. Having a plan in writing is extremely important.
In the next 20 years I believe that the future of healthcare is a home-based model. That if they spend the time to be intentional about their future, people will choose to remain in the place they call home. Working in hospice, I have been able to see the difference in those who choose to die peacefully in their home without being hooked up to monitors and equipment. Hospice has been doing this model of care since it became a Medicare approved benefit in 1986 and is based on the premise that individuals and their caregivers make the choice of keeping an individual in their home with a focus on comfort care.
Advocacy for holistic healthcare for our seniors is extremely crucial. In 2017 there were approximately 368,000 people living in Allen County. Of those 368,000 people, 13.5 percent were over the age of 65.
[6] In Fort Wayne, primary housing options for those who do not have the assistance or resources available to them for in home care is focused on assisted livings and long-term care facilities. Of those 23 percent of individuals who put their wishes in writing, my hope is that acceptable medical care and housing options made the list. There are many different models that allow individuals to remain in their home, but currently those options can be costly. My hope for the future is that our seniors have options to live and continue to be an active part of our communities.
When someone gets a terminal diagnosis, their world stops spinning in that moment. Death consumes them and overwhelms them. Decisions become harder. Almost immediately the spouse, partner, family member or friend becomes the caregiver, support person, medical liaison, and advocate. These times are overwhelming. Advanced Care Planning ahead of these life-changing conversations can help guide navigating through these difficult decisions and conversations.
Planning and knowing what you are facing as you near death allows you to do focus on your mission in life. Knowing exactly how you see spending this time leaves less time focused on making hard decisions and more time spent on how you want to leave this world. And in these moments of clarity, the journey becomes more peaceful.
This essay is part of a citizen-led book project in Fort Wayne called FORTHCOMING: Considering the Future State of Our City. To learn more and read additional essays, visit the Foreword and Preface.
Leslie Friedel is a long-term resident of northeast Indiana. She currently serves as the CEO of Visiting Nurse in Fort Wayne, IN. Leslie holds a master’s degree in Social Work from Indiana University. She is a licensed health facility administrator and a licensed social worker. Leslie’s career has been focused on healthcare and nonprofit work. She has a extensive background in working with the seniors in our community. Leslie is passionate about leadership development and serving others.