Many of my friends and colleagues are in the “sandwich generation” – shepherding children to
independence while helping their aging parents. We chat on the phone about our concerns. A common theme is the urgent need to assist an ailing parent – often one out of state – when a devastating event occurs – a fall, a heart attack, an aggressive cancer. On the return side of the journey, friends call to voice their frustrations – why didn’t their parents prepare for the day when they could not manage their own affairs? Why didn’t they engage in more frequent and clearer discussions about their preferences when they could not speak for themselves? Why didn’t they craft advanced directives? Why did they think they would always be independent when they knew they were dealing with chronic disease?
Why, indeed , don’t we all give more thought to those questions?
Pulitzer Prize winning journalist Ellen Goodman (of the Boston Globe) recently wrote a wonderful article on this exact topic entitled “It’s Always Too Soon Until It’s Too Late”. In the article she recounts the journey of her very accomplished sister who developed Alzheimer’s disease. Her sister knew the importance of having the conversations about the inevitable decline of her disease, but somehow her knowledge was difficult to translate into timely action. Sadly, most of us delay the necessary – 90% of Americans admit that these conversations and planning are important, but only 30% have had a conversation about our preferences before it’s too late. Amazingly, even people with critical illnesses such as congestive heart failure, chronic heart disease, Alzheimer’s and cancer are no better prepared than others, even though they have a clear reason to have the conversation.
Why is the conversation important? It’s important because it communicates your preferences to the people who need to know when you are not in a position to express them. Did you know that healthcare providers typically apply extraordinary means to keep people alive, regardless of the likelihood of the person returning to function – unless there is clear direction not to do so? These measures can and do cause suffering to the person and to the family and loved ones. Not knowing what an individual would actually want creates a great psychological burden on family members who are responsible for choosing. If no family member is informed and ready, the difficult choices may fracture the relationships of well meaning family members who do not agree. Watching a loved one connected to machines as they die often leaves surviving loved ones feel guilty and depressed.
As a nurse and a daughter who has viewed the decline and death of many people, I often wonder why we put off this important task. Is it that our society is fearful of the very word death – as though somehow we would be spared its impact? Do we fear that talking about frailty, decline and death somehow makes it happen? Is it that we have cast physical decline as an “enemy” for which we must marshal our forces and fight the good fight without regard for the possibility of defeat? As I think about all those I have witnessed in physical decline- including my own parents – it occurs to me that the greatest courage is found is recognizing the possible and the inevitable and preparing for it, even when it is painful to envision. Preparation allows an individual to have control when the body and the mind would take it away. When we are children, we spend hours imagining our grown selves doing all manner of things. If we do not imagine, we cannot achieve. This is another place where envisioning the choices helps to achieve the goal. It is a gift we give ourselves and our loved ones.
To help you think about what you would want, explore the “Conversation Project” – a web site established to help Americans initiate those conversations about end-of-life. http://theconversationproject.org/
The tools will help you explore your values, your wishes and your preferences. And it will give you ideas about how to start the conversation. In the coming months, our team from Central New Hampshire VNA & Hospice will be visiting our communities, talking more about this and getting folks involved in starting conversations. It’s not too soon. Now is the perfect time.
About the Author
Margaret Franckhauser is Chief Executive Officer of Central New Hampshire VNA & Hospice. The Mission of Central New Hampshire VNA & Hospice is “Promoting dignity, independence, and well-being through the delivery of quality home health, hospice and community-based care services.” Central New Hampshire VNA & Hospice serves Lakes Region communities in Belknap and Southern Carroll County and provides Home Care (nursing and rehabilitation services in the home); Pediatric Care (direct health care, education and support services for children and families); and a comprehensive, team-based Hospice program. Central New Hampshire VNA & Hospice is a not-for-profit, Medicare-certified provider of home care and hospice services, licensed by the State of New Hampshire. The agency is governed by a volunteer Board of Trustees and supported by private and corporate donations.