Debunking Myths that Squelch End-of-Life Conversations

 

 

Sound Options debunks myths about having end-of-life conversations and breaks down the barriers to dialogue. 

There are many myths around end-of-life conversations that keep us from dialoguing with our loved ones. However, when we address the myths that keep us from moving forward, we have the power to turn them into stepping stones toward our goal. We’ve chose just 5 myths to debunk and turn into starting points for you and your family:  

1.       MYTH: We’re living longer, I have time.

In the year 1900 in the United States, the average life expectancy was 49.2 years. When our parents were born, that raised to early to mid-60’s. And now, life expectancy is 80 and beyond. We are living longer, there is no question about it. However, spoiler alert, we are adding more years of old age, not more youth.  End-of-life conversations make us think of bedsides and final days, but the truth is having conversations about how we want to live the later parts of our lives could affect a span of 10-20 years! The startling trend is that even though we are living longer, we are not talking about and planning for what that time will look like, what values and wishes will drive those years, and how we will indeed face our own mortality.

2.       MYTH: End-of Life Conversations are about Death.

No one likes to talk about death. Frankly, it’s morbid. Ironically, we are doing ourselves and our families a great disservice with our great silence. End-of-life conversations are not so much about death and dying, but how we wish to live and respond to situations in the later parts of our lives. Often we get bogged down in the logistics of Powers of attorney, stocks, illness, decisions, but we skip over the most important aspects. Our values, life experiences, spirituality, wishes and beliefs about old age  will inform our decisions. This is the starting point and driving force for conversations.

3.       MYTH: The End-of-Life Conversation is Singular.

It is a misnomer to portray, “the most important conversation you’ll ever have” as a single conversation. You have it, you check it off the list and you’re done. The truth is, that is way too much pressure for such an important topic. You will most likely have a series of conversations. Some intimate and small and some with the larger family involved. It is important to give everyone involved space to think and process the options and emotions. The number one reason to begin having the conversation early is that crisis can stifle true wishes from rising to the top because of a lack of time.

4.       MYTH: If I have the conversation, it means I’m getting old and people think I’m about to die. 

There are many stereotypes about aging. Talking about what it means for each individual to feel old can be an important starting point to usher in the conversation slowly. The foundational concept of the conversation is to have a plan in place long before you need it, so when and if the time comes, you are prepared to respond well to a variety of situations. We value pre-planning in so many other aspects of our lives, but end-of-life seems to be a blind spot in our culture, because we are so adverse to face it for ourselves or our loved ones.

5.       MYTH: I have to make all these decisions on my own.

Having a conversation about end-of-life is deeply personal; there are some questions that only you can answer. Everyone will have a different idea of what a good death will look like and each vision of living the good life is unique. That doesn’t mean that you have to delve into the logistics, paperwork, and decisions on your own. Consulting with a professional geriatric care manager who has gone down the road with many families can really take the pressure off of the loved one and family members. As a neutral party, they lay out options, help navigate the healthcare system, guide you through logistics and paperwork, help apply for financial assistance if needed, lay out a formal care plan, and even make referrals to vetted elderlaw attorneys and financial planners. Go ahead, take a deep breath.

 

Now that we’ve debunked 5 large myths, we’ll take what we’ve learned and shape it into a starting point for your own conversations with your loved one and family.

1. A Starting Point | Start with what your loved one values. Before you dive into all the details, lay down the foundation of desires and wishes. This will provide a guideline for making more detailed decisions later on. You can refer back to your initial conversation and ask, “Does this decision align with my values?” Your role as a loved one at this point is to be an active listener, respecting the human capacity to dream for their own life at any age. It is by listening that we give our loved one power and control over their life and lay a foundation for further conversations. Some examples of topics you might address at this stage are:

  • Spirituality | We all answer the question, “what matters most?” in different ways. Regardless if your loved one is part of a particular religion or not, talking about the values that shape their life, the meaning and wisdom that sustains them are an important part of the conversation. Ask, what do you hope for your life?  
  • Stereotypes | What does aging mean or look like to you? What we believe about old age, can directly impact how long we live, our activity level, and even our health. Addressing stereotypes at the outset may also help them engage in the conversation more fully. 
  • Fears | Talking about fears can be a difficult but freeing aspect of the conversation. Ask your loved what they are afraid of about aging? Are there any family tensions that make them concerned about having the conversation or making decisions? Are their circumstances or health concerns that they are concerned about? 
  • Home | What does it mean to be home? What places, objects make you feel at home? What was your favorite home you’ve ever had and what made it your favorite? What do you value most about where you live?    

2. The Logistics | Sit down with your loved one and create a road map of conversations. Don’t try and tackle all of it in one sitting. Both you, as their family member, and the loved should be able to add items to the list that are important to talk about. Don’t worry about having answers at this point. Creating and agreeing on a list of talking points will give each person the ability to reflect and develop their thoughts around each topic, before having to communicate them to a family member. Some important topics that should be on every list are:

  • Financial Planning | Long-Term Care Insurance - How are we planning for the future financially and how can we work toward being able to financially support the wishes of the loved one? 
  • Living Will & Legacy | Would your loved one like to give charitable gifts to any organizations or people that are important to them? Are those wishes documented in a living will?
  • Advanced Directives | This document is really about documenting wishes for care received at the end-of-life. You could ask, “If you were unable to speak for yourself for any reason, who would you want to speak on your behalf?”  
  • Driving | If the person is no longer able to drive in the future, how would the loved one like the family to handle the situation together?
  • Safety | If the person’s safety was compromised at home, how would the loved one like the family to handle the situation together? If care were needed, what would be the best options, such as home care? 
  • Dying | Though it is difficult, talking about death can drain away some of the fear around it. Ask your loved one if they are afraid to die. What would a “good” death look like for them?       
  • The Family | While some conversations may happen one on one, or with a small group. It is important that all family members involved be on the same page regarding decisions. Consider scheduling a family meeting to articulate your loved ones wishes.  If your family is at the point of needing to make decisions and provide care for the loved one this family meeting can be an important time to talk about how each family member can contribute and schedule further conversations if needed. Assure your loved one that they can always change their mind. Making initial decisions is crucial, but they can be changed later to reflect and respond to changing circumstances.   
  • Professional Help | Remind yourself and everyone involved that you do not need to go it alone. There are experts in eldercare who have helped many families in the Puget Sound and around the country face their challenges with creative and informed solutions. Expecting yourself to become an expert in insurance, the healthcare system, legal documents, and geriatric care overnight is just unfair to yourself. Including care management services in your planning phases will take the pressure off, make the most of your time, and give you quality well-informed plans. Elderlaw attorneys are also an important ally in setting up legal documents such as a durable power of attorney. Knowing how ask for professional help and where to find it is half of the battle.   

 

 


 

 

Published on January 30, 2013.