In 2008, I knew that my mother was declining in her long battle with endometrial cancer. My mother had never had a conversation with my family members about advanced care planning. End-of-life discussions unfortunately felt like taboo for my parents. Having been an oncology nurse for some time, I knew that hospice care was on the horizon. At the time, my family unfortunately did not opt to have a medical staff member to help us talk through the process of advanced directives and DNR’s with my mother, so that process fell to me.
Looking back, I sometimes wish that I had had that conversation with my mother much earlier – that she had spoken with my father about what she wanted – that there had been a medical professional on hand to help facilitate that conversation. It was very difficult to have to be both medical professional and daughter at the same time.
If this kind of scenario can happen to me, a licensed hospice medical professional – it can happen to anyone.
But it doesn’t have to.
This month, Hospice House & Support Care of Williamsburg is partnering with the Advanced Care Planning Coalition of Eastern Virginia and VCU School of Allied Health Professions to present a screening of and discussion on the PBS FRONTLINE film Being Mortal.
I am particularly eager to participate in this event because it is something that I wish had been a part of my journey with my mother.
This screening and discussion panel is an opportunity to consider, both individually and as a community the importance of living like we are dying and dying like we are living.
It’s an invitation to think critically and intentionally about our own mortality – to have discussions that have for so long in our culture been taboo – discussions about living wills, medical power of attorneys, end-of-life care and advanced directives.
As a health care professional working at Hospice House & Support Care of Williamsburg, I view this month’s event as a perfect opportunity to focus specifically on advanced directives. I see so often how these documents ease the transition process for our guests and their loved ones, and want to share how they might help others in the process.
What is an advanced directive, you ask?
As defined by the Advanced Care Planning Coalition of Eastern Virginia, an advanced directive is a legal document that contains both instructions for medical treatment as well as the name of your health care agent.
A thorough advanced directive would describe the kind of treatment you would want depending on how sick you are. While advanced directives tend to tell your medical team the type of treatment you would not want, they also designate the type of treatment you would like no matter how ill you might be.
Each state in the U.S. has different laws pertaining to advanced directives. It is important that you know the laws of your state when you move or receive medical care out of state, as your original advanced directive may not be recognized in a different state. To read about advanced directive laws and forms for each state, click here.
Advanced Directives are a must, especially when it comes to hospice care. Here are three reasons why you should have one if you are facing a life-limiting illness:
- An Advanced Directive gives you agency.
Terminal illnesses cause us to lose our sense of control in life. An advanced directive is about reclaiming control when control gets thrown out of the window. When we actively get to choose whether or not we have tube feeding, IV fluids, kidney dialysis or any other treatments to prolong life, we relocate our own sense of say in how we live. It is amazing to me, as a medical practitioner to see the immense amount of power and peace having an advanced directive brings to our guests here at Hospice House. They can focus more fully on each day, not worrying about whether their wishes will be honored in the process.
- An Advanced Directive gives your loved ones peace.
The end-of-life journey can be an emotionally taxing process. When individuals are under emotional influence, rational thinking is often absent, and individual desires can become overrun by emotional interventions. Having an advanced directive in place gives those closest to you a guideline to follow when navigating the medical process feels foreign and overwhelming. They can focus on being the daughter, the wife, the father, the brother instead of the last-minute decision-maker. There’s so much more peace when the papers are filled out.
- An Advanced Directive increases the quality of your life at the end-of-life.
The beauty and the downfall of advanced directives is that they can get EXTREMELY specific. Sometimes navigating an advanced directive form can feel like this Seinfeld episode I saw the other day at a National Palliative Care Conference.
While we cannot plan for every kind of scenario – and maybe even have to find room for humor in advanced care planning – we can ensure that our quality of life will be what we would like it to be through an advanced directive. The more detailed an advanced directive, the less likely we are to receive interventions that might inflict pain and the more likely we are to receive interventions that will provide comfort and uphold our beliefs about living fully. Perhaps this means withholding a feeding tube, or perhaps this means choosing palliative chemotherapy. After all, hospice care is not about hastening or postponing death, but making each and every day count to the fullest.