Advance directives can go a long way toward making sure you get the type of care you want. There are potential stumbling blocks, however. Difficulties may arise when the values of healthcare providers differ from your own, or when the policies of health systems or care facilities conflict with your instructions. Here are some suggestions to help avoid such problems.
Choosing Healthcare Providers Who Will Respect Your Priorities
If your priority is relief of suffering and a peaceful death rather than simply prolonging life, you want to know that your healthcare providers will honor your wishes. Some will support a full range of end-of-life options, including palliative sedation, stopping unwanted medical treatment, voluntarily stopping eating and drinking (VSED) and, where authorized by state law, prescribing medication to end suffering and allow a peaceful death, known as medical aid in dying. Others may not.
Establishing an understanding with your doctors is particularly important. In addition to general concerns (how will they work with you and your loved ones to honor your wishes; will they do their best to fully explain all procedures, treatments, alternatives and risks; will they be available to answer questions and respond to your needs) you will likely want to explore some specifics.
For example, you can ask about their approach to pain control and symptom management, and about the support they will provide if you choose to stop unwanted treatment, voluntarily stop eating and drinking (VSED) or request medical aid in dying.
Read How to Talk to Your Doctor About Your End-of-Life Options for ideas. The Advance Planning Toolkit contains a sample End-of-Life Wishes Letter to Medical Providers you can use as a starting point for your own letter or conversation.
Obtaining Referrals, If Needed
If your doctor cannot support your end-of-life decisions or does not wish to manage your care, you always have the right to seek care from another source. You can and should be referred to someone else.
If your insurance company will only pay for services provided by a contracted healthcare system or group of physicians, you can contact your insurance company for a list of contracted providers. If your healthcare system has policies in place that will not enable your physician to participate, ask them for a referral to another provider outside the system, or seek one yourself.
In the Toolkit: The sample End-of-Life Wishes Letter to Medical Providers (page 25) offers a starting point for your own letter to your doctor. Download the Advance Planning toolkit.
Avoiding Problems if an Institution's Policies Conflict With Your Wishes
It’s possible that in an emergency you could be admitted to a hospital whose policies conflict with wishes stated in your advance directive. Compassion & Choices offers a Sectarian Healthcare Directive as a possible addendum to your advance directive. It states that admittance does not imply consent to unwanted treatment and requests transfer if warranted.
Another situation worth guarding against is the possibility that an assisted-living facility’s policies would be in conflict with a resident’s wishes for a peaceful death. Adding a rider to the contract will clarify the resident’s expectations and the facility’s agreement. Our Advance Planning Toolkit includes such a rider for you to review.
Special Considerations for Non-Traditional Families
Law and practice may still create difficulties for loved ones who do not fit the traditional definition of a spouse or close family member. Despite the progress made through marriage equality, many same-sex couples continue to have their preferences ignored by relatives and health providers. Decision-making authority that would be automatic in heterosexual relationships may be actively denied. Life partners may be prevented access to one another at the deathbed. At almost every moment in the continuum of care from diagnosis to death, it is advised that same-sex couples take proactive steps to protect their basic healthcare rights.
A detailed advance directive is an important safeguard. Consider including Compassion & Choices’ Hospital Visitation Authorization form as an addendum. It ensures that the people you most want to be with you are admitted on a priority basis, whether or not they are family members.
In the Toolkit:
The Sectarian Healthcare Directive (page 27) addendum helps you avoid unwanted treatment or request a transfer if a hospital’s policies conflict with your wishes. The Rider to Residential Agreement With Assisted Living Facility (page 29) adds end-of-life stipulations to the contract. The Hospital Visitation Authorization (page 30) addendum to your advance directive lists those who should be given first preference in visiting you.