End of life decisions: Would you include your family?

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At some point we will all come to the end of our life. Some of us will be able to make decisions right up until the very end of our life. But some of us will lose our capacity to make end of life decisions. In this post, Pink Families explores some of the ways we can prepare for this scenario and some of the effects on our family when we don’t make decisions in advance.

Should I make end of life decisions beforehand?

Not deciding before I need to

There are many reasons why some people decide not to make end of life decisions about their care before they absolutely have to.

Three of these reasons are as follows:

  1. Some people believe that they won’t know what they will want to choose until they are in the situation. This means that making a decision before becoming ill is not the best option.
  2. Some people don’t wish to think about what may happen. It’s easier not to think about it.
  3. Some people think that avoiding making decisions beforehand will avoid burdening family members.

Deciding in advance

In contrast, other people take the opportunity to make decisions before they become too unwell to do so. They do this to make it easier for their families.

They view advance planning as a tool to help avoid a situation where a family member has to make a decision to stop life-sustaining treatments, for example.

They also see advance planning as a way to help keep control over a difficult situation and to make sure their preferences are fulfilled.

Can my family make decisions for me?

Yes in some countries your family can make decisions for you if you lose the capacity to make decisions for yourself.

There is legislation in place to protect what you want to have happen in a number of countries, including in the UK, Australia and in the US.

Such legislation provides guidance to individuals and families about how to make decisions in advance.

For example, in the UK, living wills and advance directives can be prepared. These documents help explain your preferences for care in future scenarios. An advance decision to refuse treatment is a legally binding document that contains a patient’s wish to refuse medical treatment in the future.

In the US you can complete an advance health care directive (AHCD). An AHCD is a generic term for a document that instructs others about your medical care should you be unable to make decisions on your own.

In this video PBS shares the story of a family and provides insight into the difficulties involved with end of life decisions. The story was filmed in the intensive care unit at Mt Sinai Medical Centre (US).

What do most people prefer?

Survey research has shown that most people wish to be involved in making decisions about their own care when they are able to.

For example, a large recent study looked at preferences in seven European countries: the UK (England), Germany, Spain, Italy, Portugal, Belgium (Flanders) and the Netherlands. The survey findings showed that 74% said they would like to be involved in making decisions about their care when able to make decisions about this.

Many wanted their partner or spouse (53%) to be involved in helping them make their decision. 40% also wanted other relatives to be involved. This means that for many people, end of life decisions are family decisions.

However, the survey also showed that not as many wanted to think about what they would want if they were unable to make decisions.

Only 44% said they would want to make any decisions before losing the ability to do so. 62% said they wanted their partner or spouse to make the decision for them. 48% also wanted other relatives involved.

Consequences for family

It is understandable why some don’t want to think about what might happen in the future. This is a legitimate choice.

However, research is starting to show a number of negative effects on family members for making decisions on behalf of their loved ones. These negative effects include increased feelings of guilt, doubt and stress.

What next?

You have a choice about what to do about your end of life decisions. Weighing up the pros and cons for you and your family may help you decide on how best to proceed. Talking to your doctor may help you work out your options. Also, know that there are organizations working to help you.

References

Daveson BA, Bausewein C, Murtagh F, Calanzani N, Higginson IJ, Harding R, Cohen J, Simon S, Deliens L, Bechinger-English D, Hall S, Koffman J, Lopes Ferreira P, Toscani F, Gysels M, Ceulemans L, Haugen DF, Gomes B, on behalf of PRISMA. To be involved or not to be involved: a survey of public preferences for self-involvement in decision making involving mental capacity (competency) within Europe. 2013. DOI: 10.1177/0269216312471883.

Silveira MJ, Kim SY, Langa KM. Advance Directives and Outcomes of Surrogate Decision Making before Death. N Engl J Med 2010;362(13):1211-1218.

In this video different families talk about the importance of talking about end of life decisions.


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