We make plans for many parts of our lives, from major decisions such as purchasing a home to training for a marathon. Yet, when it comes to planning for future healthcare needs, especially how we want to live if faced with a serious or life-limiting illness, we’re not nearly as inclined to create a plan and put our wishes in writing. For many people, even the idea of thinking about it, let alone talking about it, is uncomfortable.
Advance care planning is not just about old age either. Although we all hope to live a good, long life, a medical crisis can leave you too ill or debilitated to make your own healthcare decisions at any age.
Communicating your wishes about the kind of care you want or don’t want can make an enormous difference to healthcare providers, loved ones and the patient. When your wishes are clear, healthcare workers are much more likely to follow your wishes, especially in situations where you can’t speak for yourself. Advance care plans give health providers tools to create a plan of care that meets both treatment and quality-of-life goals, and family members can be confident knowing they are honoring their loved one’s wishes. Research also found that taking the steps to create a plan also improves patient quality of life and reduces anxiety.
What is advance care planning?
Many people may have heard of advance directives and living wills but are still not quite sure what doctors are talking about when they mention advance care planning. The National Institute on Aging defines it this way: Advance care planning involves learning about the types of decisions that might need to be made, considering those decisions ahead of time, and then letting others know about your preferences, often by putting them into an advance directive. In other words, advance care planning refers to a whole process of reflection, learning, and discussion with others, as well as to the creation of an advance care directive.
Start the conversation.
It’s human nature to want to avoid thinking and talking about dying, but it’s an important conversation. Here are a few ways to get started:
- Choose a time and place where everyone involved feels safe and comfortable.
- If it feels uncomfortable to talk about, it’s okay to acknowledge that. Sometimes a bit of humor can help take off the pressure.
- If the other person refuses to talk or changes the subject, try saying “That’s okay, we don’t have to talk about it right now but it’s something I would like to talk about soon. I want to be sure I know your wishes so I can act on them when the time comes.”
- It’s okay to express your emotions. It’s perfectly normal to feel sad. Talking about future care can be upsetting.
- If you find the discussion overwhelming, it’s okay to continue the conversation at another time. Advance care planning is a process. It doesn’t need to happen all at once.
- This is a conversation about you and the person you support, so encourage the person with dementia to be involved as much as they’re able.
Things to consider.
There are a lot of things to consider when making an advanced plan. These basic things are a good way to get started:
- Understand current health conditions and how they are likely to progress. This means learning about a person’s chronic conditions, understanding how they might progress and worsen, and having a sense of what kinds of health crises and declines you might face in the future.
- Reflect on values and preferences for future care. Many people find that talking to friends and family helps them think through their values, what type of care they’d want during a health crisis, or a possible end-of-life situation. It’s also very important to consider “Who do I want to have make medical decisions on my behalf, if I become too sick to decide for myself?
Commit to the plan in writing.
Having the conversation with loved ones and making a plan is great but don’t neglect to make sure it’s written.
- Communicate preferences in writing and in conversation. Although the ideal is to complete a legal document such as an advance directive, any information put in writing (for instance, a dated letter to one’s family and primary care doctor) can be very helpful later on.
- Reassess preferences and plans periodically. People’s needs, wants and preferences often change over time, as their health situation and life situations evolve. So, it’s important to regularly revisit the advance care planning process. This is true even if an older person has lost the ability to make major medical decisions, as some care planning documents can be revised or completed by a surrogate decision-maker.