One of the most difficult aspects of getting older or having a terminal illness is making decisions about what kind of care you want at the end of your life. People may delay the conversations for a variety of reasons and, if they don’t address them and make their wishes known, their families may be left with difficult decisions.
A recent article on Scope, the Stanford Medicine blog, addressed this issue and offered a potential solution. Here’s what you need to know.
Why Do People Delay End of Life Planning?
The first question is why do people delay end of life planning as they age or when they are diagnosed with a terminal illness? The answer to the question is, as you might expect, not simple.
The first reason is simply that the patient doesn’t feel prepared to cope with end of life decisions. They may be holding out hope that they’ll survive despite a poor prognosis or they may simply be overwhelmed. They may also be reluctant to have emotional conversations with family members about their impending death.
Another reason is that people sometimes wait for their doctors to bring up the topic of end of life care – and the doctors don’t do it. Here again, there are multiple reasons why a healthcare provider might not raise the topic. For example:
- They may not have time given the relatively short duration of most appointments.
- They may be reluctant to take away a patient’s hope.
- They may not be comfortable at the prospect of an emotionally difficult conversation.
The result can be a standstill where the patient is waiting for the doctor and the doctor is waiting for the patient. If the situation isn’t resolved then it may be too late. The patient becomes incapacitated and their family is left with no guidance about what the patient wanted.
What Decisions Need to be Made?
End of life care typically refers to what treatments and measures a patient wants as they approach the end of their life. For example, they might specify:
- Whether they want to be resuscitated if they stop breathing or their heart stops beating (a DNR order)
- Whether they want a feeding tube if they lose the ability to eat on their own
- Whether they want to be kept alive with life support machines if they are unable to breathe on their own
When these decisions are not made ahead of time, the patient’s spouse, children or other family members may be left in the difficult position of having to guess what the patient wants. Such decisions can be painful in any circumstances. Creating legal documents that specify your wishes will alleviate some of your family’s pain.
How Can Technology Help?
Stanford doctors and computer programming students worked together to create CARE-IT, short for care itinerary. It’s a mobile app that walks patients through a series of questions designed to help them make end of life decisions, execute the legal documents they need and share them with family members.
The program has three parts, as follows:
- Learn. The learning element of the app provides users with education about why end of life planning is important. The app uses both written materials and videos created by Stanford Medicine physicians.
- Record. The recording element of the app walks users through a series of questions developed by the Stanford Letter Project. The theme is “what matters most” and it assists patients to fill in advance planning forms with legal standing. There’s also an option for patients to record a video of their care preferences.
- Share. The sharing element of the app empowers patients to share their end of life documents (or videos) with their family or healthcare providers. Sharing ensures that their wishes are both documented and understood by the people who will be responsible for honoring them.
The goal of CARE-IT is not necessarily to require patients to use it to document their end of life preferences although that is an option. The app’s creators hope that it will encourage patients to engage in conversations with their doctors and family members by removing some of the fear associated with end of life decisions and normalizing the topic.
How to Start End of Life Discussions
There’s no question that it can be painful and scary to think about death or to raise the topic with your family. Our recommendation is that even people who are not near the end of their lives can benefit from having these discussions with their families.
Creating advance directives such as a living will and a durable power of attorney can take nearly all of the uncertainty out of illness or end of life care. These documents may be created at any point in your life and updated as needed.
A living will specifies your desires about end of life care, including whether you want to be put on life support. A durable power of attorney empowers a person you designate to make medical decisions on your behalf if you are unable to do so.
Where Can You Get CARE-IT?
The CARE-IT app is still being tested which means it is not yet available to the public. However, the app’s creators are coordinating with the primary care team at Stanford Medical to set up a pilot program for the spring of 2021.
It’s probable that other app developers are working on similar solutions. However, the lack of current availability shouldn’t stop you from making end of life plans. You can start with a conversation with your doctor or simply by doing some research of your own to learn about which documents are needed and what types of questions you’ll need to answer.
Deciding what type of care you want at the end of your life may be a daunting prospect. It’s important to remember that having conversations about the topic may be painful but will also spare your family the difficulty of making decisions without understanding your wishes in the matter.
