Tough Conversations

Around the country, families are gathering for holiday celebrations, visiting loved ones, and discussing their plans for the coming year. Yet too often, families miss this opportunity to have the important – but difficult – conversations about older relatives’ wishes for their end-of-life care.

If an older family member develops a serious illness that impairs their decision-making capacity, loved ones will often face a host of challenging caregiving, medical, financial, and legal decisions. Establishing a relative’s wishes ahead of time, through frank and intimate discussions, provides vital guidance to navigate these issues. This not only ensures that caregiving and medical care match an individual’s values, but also helps adult children and others to avoid feelings of guilt, confusion, or anxiety, which often arise when they must make these choices unaided.

However, families frequently avoid talking about this subject, which can be uncomfortable and difficult to raise. In fact, though 90% of Americans say that talking with their loved ones about end-of-life care is important, only 27% have done so. Family members sometimes postpone conversations until a health problem arises, but that may already be too late for the affected individual to communicate – especially if Alzheimer’s or dementia affects their cognition.

However, there are ample resources and proven strategies to help adult children begin these conversations with their parents and other older adults. The Conversation Project provides a Conversation Starter Kit to steer the discussion, as well as a kit specifically for Alzheimer’s and dementia. These include questions to ask older relatives, potential conversation starters, and a list of important issues to address. AARP also offers useful tips for starting to talk about advanced care planning and end-of-life preferences.

Re-uniting with family for the holidays is an ideal time to broach this topic, and can also serve as the first warning of a decline in health, especially if relatives have not been in regular, close contact with an older adult. Though the details of these discussions will vary, there are a few general principles to keep in mind:

  • Plan ahead. Bringing up end-of-life choices can be daunting, but preparation helps to ensure both that you follow through and that you cover all the areas that are most important to you. Ahead of time, consider who you want to talk to, when would be best to talk, where would be most comfortable, and the topics you would like to discuss first. You can also plan your “opening lines” beforehand, or even bring written materials, if you feel they are appropriate for the situation.
  • Address key questions. Ideally, these conversations will provide practical takeaways for a range of issues, and could even result in detailed plans. However, even if you don’t reach this level of depth, it’s important to get answers for key questions related to medical care, end-of-life choices, and legal and financial matters. For example, do older relatives have any existing concerns about their health? Have they noticed recent changes in memory or thinking? Who should be involved in caregiving and end-of-life decisions? If the situation arises, do they want the full extent of medical intervention possible, or would they prefer more limited comfort care? Where would they like this phase of life to occur?
  • Have multiple conversations. A single talk cannot cover all the topics necessary for a complete understanding of end-of-life values and wishes. Older relatives will likely need to reflect on these important questions, alone or with others, before reaching a conclusion. Expect to have multiple conversations, and don’t create unnecessary pressure by attempting to address every possible scenario in a single discussion. Once you bring up the topic for the first time, later conversations will likely be easier and more focused.

Honest, two-way communication is the best way to prepare a family for the tough decisions that accompany an older relative’s end-of-life care. By establishing a shared understanding about this phase of life, families can ensure that a loved ones’ wishes are respected, while also reducing the stress and emotional strain of this period for other relatives. The weeks ahead offer an excellent opportunity to take a first – or fifth – step towards this reassuring,