This post is sponsored by the National Hospice and Palliative Care Organization
“According to a national survey by the National Hospice and Palliative Care Organization, more than 90 percent of people think it’s important to talk about their loved ones’ and their own wishes for end-of-life care, but fewer than 30 percent of people have actually had the conversation. “
This subject couldn’t have crossed my desk at more opportune time. I was reading my email on my phone while I was sitting at the hospital where my mother-in-law lay dying of kidney failure. I know we had discussed this issue several times in the past, she and I, both in private conversations and in talks with other family members present. The problem we had at this precise moment, though, is that nothing had been written down on paper.
When the doctor came in and talked with my brother-in-law, my husband, my daughter, and me, the question came up as to why they were still doing tests, still drawing blood, still offering medications, when we had been told that there was nothing that could help her at this point. The doctor’s answer stunned me: “She has not told us that she does not wish to be resuscitated. As long as there is no notation on her medical records, we HAVE TO DO EVERYTHING we can to keep her alive.” Mom told the doctor right then that she did NOT want any more medications, did NOT want to be resuscitated, and did NOT want to prolong the inevitable.
If you and or your family members are included in the many people who simply haven’t gotten around to talking about what your wishes are for your care at the end of your life, now is the time to start the conversation. Today. Or the next time you are together. Taking the necessary steps to crystallize what you and they want and formalizing it is sometimes a hard conversation to have. Sometimes it’s because people don’t know how to start the conversation with their loved ones.
It doesn’t have to be that hard. It can be made easier if you start the conversation by talking about what YOU want in the event you are hospitalized with a life threatening or terminal illness, and couldn’t verbalize what you wanted to happen to you. Here are some simple steps, suggested by James Mittelberger, M.D., Director and Chief Medical Officer, Optum Center for Palliative and Supportive Care:
- Start with your loved ones. Honest communication can help families avoid the stress of guessing what a family member would want. You may find that you and your loved ones may see some things differently. That’s okay. It is most important that your loved ones know how you want to be treated and are willing to respect your wishes. Decide who you prefer to make decisions on your behalf in case you are unable to express your choice.
- Think about what is most important to you. What are your greatest fears, hopes and goals? What do you most care about? Most people can be effectively treated for pain, but how much do you want to be at home; or avoid being on a breathing machine; or being dependent in a nursing home? How sure are you of your choices? Do you want your chosen proxy to have leeway to change your decisions? Discuss these topics with your loved ones to reach a shared understanding of your desires.
- Use the resources available to get better informed and be sure to discuss your choice with your health care providers. You can find valuable resources to help you and your loved ones make decisions more manageable atwww.prepareforyourcare.org, theconversationproject.org, and agingwithdignity.org.
- Make it official. Once you’ve had the conversation, it is essential to formalize your decisions by putting them in writing. Complete an advance directive. Special medical orders can be developed with your doctors to represent your care decisions for providers. Finally, assigning a health care proxy or agent identifies the person you trust to act on your behalf if you are unable to make decisions or communicate your wishes. Be sure to share your documents with your providers and your proxy, and to have copies available in case they are needed.
While it is still a difficult thing to arrange for hospice care for someone you love, it is better to know in advance that that is what they want for themselves. Take the time to start the conversation with your family, including everyone who is over the age of eighteen. End of life care is not just for the very old. You never know what is going to happen tomorrow, so get everyone’s wishes down on paper today.
Dr. James Mittelberger is the Executive Director and Chief Medical Officer of Optum’s Center for Palliative and Supportive Care. Optum’s Center for Palliative and Supportive Care brings together industry experts and Optum capabilities to lead the advancement of palliative and supportive care to ensure every patient facing serious illness lives their best possible life.