Heart to Heart Conversation: End-of-Life Wishes

Discussing end-of-life is not comfortable, and our society does not prepare us well for conversations about death. It is a part of life, but like aging is often not faced until it is a forced confrontation. It is never too early to have a heart-to-heart conversation with your parents about their end-of-life wishes. In fact, the sooner, the better. This discussion is much less emotionally charged when end-of-life is not imminent. With a bit of preparation, you will feel empowered and proud of yourself for initiating a conversation that has probably already been on your parent’s mind.

The definition of a heart-to-heart conversation, according to the Cambridge dictionary, is:

“A talk or discussion in which two people talk honestly and in a serious way about their feelings.”

Vulnerability and curiosity

When we approach the conversation by demonstrating our own vulnerability, we create a safe space for family members to express their feelings and emotions. Acknowledge that the subject is unsettling and uncomfortable to discuss. Being vulnerable takes courage. Having these conversations takes courage. Sit with the discomfort and then lean into it. Explore your own fears.

Choosing to be curious is choosing to be vulnerable because it requires us to surrender to uncertainty. – Brené Brown

Curiosity about your own thoughts surrounding end-of-life will help you begin the conversation with your parents. You may start by asking If there is a durable POA or a Healthcare POA already in place, a healthcare representative may have already been designated. It is a good practice to review this document annually to ensure that no changes are desired. From there, ask open-ended questions. When we are curious and seek to understand, we are able to avoid assumptions. You may be surprised to find that your reflection on death brought you to an entirely different place than that of your parent. The most important outcome, especially in the early discussions, is to keep the lines of communication open.

How to prepare for the conversation:

Learn the terms

When you have an understanding of the components that will be a part of the conversations, you can decide the order and depth as you progress. The advance directives are a good place to start because of the importance of understanding your family member’s wishes and then ensuring that there is a person designated to support and communicate those wishes if required.

• Advance directives are the documents that indicate one’s wishes should they not be able to communicate them on their own. They include a living will and a power of attorney for health care.
  • Living will
    • Health care declaration
    • Terms vary from state to state
  • Healthcare POA or Medical POA
    • Designates a proxy to make medical decisions in case of incapacity and to communicate with the patient’s doctor to ensure treatment wishes are honored
    • Health care surrogate
    • Terms vary from state to state
• Do not resuscitate order DNR
  • An order arranged and signed before an emergency
  • A statement declining CPR if the patient’s heart stops beating
• Physicians order for life-sustaining treatment POLST
  • A form that communicates treatment wishes
  • Programs vary from state to state
• Cemetery arrangements
• Funeral arrangements

Plan the conversation

• Spend time reviewing the tools offered by The Conversation Project. The conversation starter kit will prompt you to explore your own thoughts on end-of-life to better prepare you for the conversation with your family member. You will find icebreakers, questions, and tips that will help you manage the conversation.
• Consider ordering The Five Wishes. It is an advance directive document that is easy to use and will help guide the conversation. It is legally valid in most states. 
• Gain a better understanding of palliative care and end-of-life doula services. Knowledge is power. Researching these resources will provide information that may help guide your conversation. 

Locate the resources

When discussing end-of-life issues, it is important to understand where your family member wants to spend their final days. Your general research into palliative care, hospice care, and end-of-life doula services may lead to specific resources. It would be valuable to establish a relationship with individuals or organizations. You may want to receive materials to file away for future reference or ask questions about particular concerns. I have selected the hospice organization as well as a doula who will assist us leading up to Dad’s final days. Hopefully, we will not need the services of the doula for a few years, but having a plan in place gives me peace of mind. 

There are attorneys who specialize in elder law. The National Academy of Elder Law Attorneys offers a directory as well as information on the advantages of selecting an attorney who regularly manages your particular concerns. Not all Elder Law attorneys specialize in every field of Elder Law. It may take some effort to find the right fit.

Resistance

It is not uncommon to begin the conversation and be met with resistance. When met with a refusal to continue the conversation, table it and revisit the subject later. You may make a small amount of headway during each attempt until you achieve a breakthrough. It is worth the effort to continue because when you know your parent’s wishes, you will be able to act accordingly in the event that they are not able to communicate their preferences.

Conversations with Dad

In early March, my husband and I sat with Dad and discussed what the people in Italy were experiencing with COVID-19 and what we expected to see unfold in the US and eventually in our area. We asked Dad if he would want to go to the hospital should he contract coronavirus. He said no, and he reminded us that he had a living will. We brought up the fact that he did not have a Do Not Resuscitate order, and he asked us to take care of that for him.

This is a very personal decision. At 98, he was at peace with the fact that if his heart stopped, he was ready to leave this earth. He signed the form, we had it signed by a doctor, and it is in place on the refrigerator, a standard practice that is part of the process in case first responders arrive and need to know residents’ wishes.

One end-of-life aspect that Dad has not been willing to discuss is funeral arrangements. He is adamant that this is the responsibility of the family to manage after death. It is a stronghold generational viewpoint, and I decided that continuing to broach the subject was more harmful than helpful. In hindsight, if I had started the conversations before he reached his late 90s, the outcome may have been more productive. 

More about end-of-life services

I spoke with an end-of-life doula who had recently been through training. She had been a hospice nurse for decades and shared that her doula training added layers of value to her experience as a hospice nurse. She felt more empowered and prepared to help the entire family have a meaningful experience at the end of a loved one’s life.

Hospice and palliative care are services that are not only invaluable at end of life. Paid by medicare, these services are provided when a terminal diagnosis is given. For example, when Dad was diagnosed with interstitial lung disease, he qualified for hospice services. His medicines linked to the diagnosis were covered and distributed by medicare and the hospice pharmacy. We have access to a nurse and physician 24/7. A nurse visits weekly. This may now be a telehealth visit. A social worker is available should we need emotional support, as well as a non-denominational clergy member. If needed, the care team includes aides to help Dad with bathing and other daily activities. In addition, volunteers are available to sit with Dad. 

Meaningful accomplishment

“A person’s success in life can usually be measured by the number of uncomfortable conversations he or she is willing to have.” – Timothy Ferriss

Rather than a one-and-done event, conversations with Dad have taken place over the years. It is a process that still continues. In the beginning, it was helpful to gain clarity on his vision for a good death. It helped guide future discussions. I am not sure that the number of uncomfortable conversations measures success in life, but each conversation did feel like a meaningful accomplishment. The peace of mind is a significant gift to us both. Prepare. Begin the process. Be proud of what you have accomplished.

Please share any advice that you would add or tell us how your conversations have evolved.

If you would like help with planning the conversation or would like to talk through a plan, please contact me at SustainableCaregiving.com. All services are currently available at no cost.

Navigating the Caregiver River: A Journey to Sustainable Caregiving is available on Amazon. Also, check out the Self-Caregiving Strategies Podcast.

Schedule Theresa Wilbanks to speak on caregiving and empower the caregivers in your workplace or community with the 12 Sustainable Caregiving Strategies.

Advice offered is for general information only; please contact your healthcare team, legal or financial advisors to guide your particular situation.