One more topic for the holiday dinner table
Thanksgiving has traditionally been the most heavily traveled holiday of the year, followed closely by Christmas. It is the time of year when families are most likely to be together and the holidays offer a perfect opportunity to have important discussions about your family health history and about end of life wishes.
Because so many families gather to share a turkey dinner, the Centers for Disease Control and Prevention (CDC) has declared Thanksgiving to be National Family History Day. The CDC advises that people learn about their family history and then share that information with their doctors so they can be proactive in using screening and prevention tools. They also include a link to a form the surgeon general created to help people create a “Family Health Portrait” that can be updated as needed and shared with your doctor.
“Family history plays into preventative services and it plays into risks, so it’s something that people should discuss,” said Donald Guadagnoli, MD, chief medical officer for Falmouth Hospital. “Generally, I think most folks have a fairly reasonable idea of what their family history is like when they are living at home and growing up. But as we move out of houses and get separated, that can sometimes fall away and you might not be quite as aware of what illnesses people have.”
The other thing that sometimes happens is illnesses in the family are not always openly discussed in an honest way, especially with children, Dr. Guadagnoli said. For example, if an elderly relative ended up in intensive care because of an overdose of pills, a child might be told that they had a cardiac event. Parents might be more forthcoming about true family history with adult children.
Dr. Guadagnoli thinks the holidays are also a great time to discuss end-of-life wishes and to appoint a healthcare proxy. Usually, the family members who gather for the holidays are in good health, so the conversation is less fraught than it can be during a health emergency.
“Part of the problem is that it’s a somewhat uncomfortable subject,” he said. “People don’t know where to start so their default is not to start. Procrastination is always the easier route.”
With that in mind, Dr. Guadagnoli recommends two websites to get families started. The Conversation Project offers guides to help people initiate the conversations. Honoring Choices offers tool kits and instructions on how to fill out the forms.
There is a myriad of reasons why all adults should fill out those forms. First, it helps all of the decision makers in a family get on the same page. Often the child who lives closest has a better idea about how mom and dad are doing than the ones that live far away. That can lead to situations where you have two or three children with two or three different ideas of what mom or dad might have wanted.
“We spend the first 20 or so years of our kids’ lives trying to instill in them the importance of family and how as siblings they will always have each other to rely on and turn to,” Dr. Guadagnoli said. “Probably one of the most difficult times in a family’s life is the loss of a parent. Why wouldn’t we want to give them the gift of shared knowledge around a parent’s wishes when it comes to end of life issues?”
Dr. Guadagnoli knows first-hand how important that gift is, and also how difficult it is to make hard decisions about a loved one – even when you do know their wishes. Near the end of his mother’s life, she ended up in the hospital several times with congestive heart failure, which is a terminal illness. One day when she was in rehab, she looked at him and told him that she didn’t want to do this anymore.
“It was a reasonable thing for her at that point, so I had some clarity,” he said. “We brought in hospice to help with the planning, but when I went home that night I said to my wife, ‘I feel as if I signed her death sentence.’ Even though it was what she wanted, it wasn’t an easy thing to do.”
After his mother died, his brother expressed relief that they were able to avoid the one thing their mother was most afraid of – dying alone in a nursing home. Instead, she got to stay home with their father until the end.
“It makes you feel good when you are going through that process when all the siblings are on the same page because at that point you need to be supporting each other,” Dr. Guadagnoli said.
Older people aren’t the only ones who should be having this discussion and filling out the paperwork. Dr. Guadagnoli advises families to start the discussion with their children when they turn 18 and go off to college. In the absence of an advanced directive and a healthcare proxy, doctors will try to get an idea of what the patient would have wanted, but it’s much more helpful if a healthcare agent has already been identified.
“Most parents worst nightmare is having to attend to end of life issues with one of their children,” he said. “While clarity around their wishes will never make the decisions easier, it may help to decrease some of the pain.”
Dr. Guadagnoli and his wife had the discussion with their two daughters one Easter and by the end of the conversation all four filled out healthcare agents listed on the proxy forms. It’s not a one-and-done conversation, though. When his daughters filled out their forms, they listed Dr. Guadagnoli and his wife as their healthcare proxies. Now that they are older and getting into serious relationships, they might want to change their healthcare proxy to a spouse in the future, he said.
Younger people aren’t the only ones who should make sure the forms stay updated.
“At this point in time, my wife and I are each other’s agents, but at some point in time, it may very well be that one of the children ends up being the agent if one of us begins to have cognitive issues,” Dr. Guadagnoli said. “Those conversations are easier because they are normal family discussions because it’s something we have talked about over and over again.”
