“The tide in advance care planning has been moving away from forms and toward discussions,” reflects Dr. Rebecca Sudore, a geriatric specialist at UC San Francisco. After all, it’s impossible to narrow one’s life down to a set of questions on a form.
End of life is unknowable until we are in the midst of it, but it deserves to be treated with as much compassion and deep consideration as we give to every other precious transition in life. Ironically, technology—though dispassionate by nature—is opening the door to more heartfelt and intimate conversations around end of life through new online resources.
If you’re a surrogate tasked with honoring your aging loved one’s end of life care plan, you’re likely experiencing emotional and communication challenges of your own. But with the help of some simple online tools, you can reconcile your own anxieties and uncertainties about the significant responsibility you hold for your loved one. The solutions come down to compassionate and effective communication: with your aging loved one, with your own confusion and resistance, and with the medical and service professionals who will be administering your loved one’s care through their end of life journey.
Reconciling Your Own Apprehensions, along with Your Aging Loved One’s
Approaching the subject of a loved one’s end of life can be an incredible hurdle, but both of you sharing thoughts and feelings about the choices to be made ahead can make all the difference to their future quality of care. Don’t assume that what you would want for them is the same as what they would choose for themselves.
If fears and anxieties present an unshakable barrier to these conversations, it won’t serve either of you to just set it aside and neglect those deep feelings. By doing so, you may feel as if you’re delaying death, but, in truth, you’re delaying the life that remains, allowing heavy feelings of denial and rejection to weigh on your moments left together.
In response to the need for healthy communication around end of life, Dr. Sudore and her colleagues have designed a website to help align families with what is most important to focus on when fostering a care plan for an aging loved one. The PREPARE program was designed to be intuitively accessible for diverse users, including those with limited computer skills or sensory limitations, and is offered at no cost to users.
Based on careful research, this online tool guides you in making informed medical decisions, choosing the best surrogate to oversee an advanced directive, and becoming present to the realities and emotions that can seem overwhelming to approach. As a digital companion, it will actively encourage you to communicate, even when the topics are difficult and uncomfortable.
Together, Learn to Welcome All of Life’s Opportunities
Remember that neither of you has to navigate this challenging experience alone: you have each other, and you can feel empowered to reach out to compassionate professionals to support you through your strong emotions, rather than away from them. When you do step into the conversation about your loved one’s end of life, and their wishes for how their treatment should be handled, you may find yourself feeling resistance. In this case too, a professional or other trusted third party can act as a mediator to help you understand each other’s point of view—and to keep in perspective the love and quality of care that are most important.
Another excellent resource is Institute on Aging’s interactive communication quiz that helps you to understand your aging loved one’s style of communication—and your own. Because so many strong emotions are involved as you discuss an end of life care plan, these discussions can be a real challenge, regardless of whether your styles are different or the same. Gaining this objective viewpoint can help you to recognize blind spots in your own perception—and to have compassion for the other’s unique experience.
Even if your aging loved one is unable to take the quiz for themselves, you can fill in the answers for them from your own understanding. Simply by opening your mind and your heart to greater awareness and insight, you’re helping to welcome into being the best possible care plan for your loved one.
Acting as the Guide for Your Loved One’s Healthcare Professionals
It’s important for you to accept and embrace, on a practical level, the real importance of your role in your loved one’s ultimate transition into end of life. Once you’ve come closer to appreciating how important their agency is in determining the course and grace of their life’s dénouement, you can move forward with the down-to-earth administration of their intentions. It’s all the more important that you have these conversations with your aging loved one and oversee the course of their medical treatment because you can’t take for granted that doctors will approach these conversations or make decisions in line with your loved one’s values and choices about how care will or will not be administered.
Although we’ve established it’s not the only solution to ensuring compassionate care, preparing an end of life care plan through advanced planning paperwork that the medical community can relate to is still an invaluable step. This clear and detailed guide can help you learn not only which forms you need to complete and how, but also ways to make use of the convenient online programs designed to organize and store your information safely, in a way that you and healthcare providers can easily access. These programs can make the process much easier and much more reliable than depending on written forms or physically filing copies with all the providers involved.
Dr. Atul Gawande has learned through personal experience, and by opening his own heart toward patient care, that administering end of life care plans is a powerful challenge for all involved. He says that doctors—including himself—“have difficulties talking to patients and families about death because we see life as a string of moments, which needs to be extended, rather than a story that matters.”
Here, your role is to step in, to embody the collection of forms, and to bring your loved one to life in the physicians’ and service providers’ eyes. Trust that your emotions are with you, not against you. Help these caregivers to see what they can’t in the forms alone. And remember how important it is to honor your aging loved one’s wishes even when they push up against your own. By allowing their voice to be heard, you are the primary caregiver who lays the path for others to walk on in their own caring roles.
Your responsibility is far from a passive one. You are guiding everyone around you to respect and honor the value of life itself, which is especially meaningful in its final stage. You are strength for your aging loved one when they don’t have the energy for it themselves. And through your efforts to really see and celebrate them, you are demonstrating for your loved one the preciousness of this space and time they are in. You are building a symbolic and eternal home of unconditional love, so their end of life journey can be one of peace and welcoming and presence.
Institute on Aging is working to build space for the unconditional care of aging adults every day. Feel free to get in touch with us for information about how you can support your loved one through an end of life care plan, or for resources on graceful aging.
