There are two things certain in life, death and taxes. We talk a lot about taxes, but rarely talk about death — or the dying process. Most people, especially people of faith, don’t fear death. They fear the dying process. They fear being in pain and having other symptoms, such as nausea or shortness of breath. They fear dying alone and they fear being forgotten. Not talking about death often makes the end of life more difficult for you and your loved ones.
November is National Hospice Month. November is also when we celebrate Thanksgiving — a time we spend with our families and friends. Why not combine the two and discuss your end-of-life wishes with those you love? This is a true gift. Having conversations with your loved ones is important so they know your wishes. Advanced care planning helps others make decisions about the care you would want to receive if you become unable to speak for yourself.
Having the conversation years before you face the end of life gives you and your loved ones the opportunity to learn about options. And it gives you a chance each year to revisit your wishes — and share them with your loved ones. It gives you peace of mind by making your decisions and values known, not only to your family and friends but to your physician as well.
Some great questions to start your thinking about the conversation are:
If you knew you only had six months to live, what would you want to do? Do you want to die at home? Do you want hospice care? Who do you want to make decisions for you if you cannot make your own medical decisions? What kind of treatment do you want or don't want? Once you die, are you willing or unwilling to donate your organs and tissues? Who will take care of your pet when you die? How soon can hospice care be provided? What do you want to eat if you no longer have to worry about your cholesterol? There are many resources online. Two of my favorites are the Conversation Project, which encourages family dinners to discuss end-of-life options, and engagewithgrace.org, which leads you through the five most important questions to answer. If you are ready to do advanced care planning and appoint your healthcare power of attorney, don't forget you need to use forms that are legally compliant in your state.
Most of us will die from an illness either of the brain, the heart, the lungs, or from cancer. So, when you have been diagnosed with a terminal illness, how will you make every day count when you can count your days?
First and foremost, let your wishes be known. Are you going to try curative treatment to your last breath or do you want comfort care or something in between? If you want comfort care, you will need to know about hospice and palliative care. Hospice care provides quality of life with a highly trained interdisciplinary team that addresses physical, emotional and spiritual well-being. But hospice is not a choice for everyone. Each of us must decide in consultation with our physician what is best for our situation, taking into account our individual beliefs and values.
I am passionate about hospice care being available and accepted for anyone that wants it. Most families tell us that they wish they had come to hospice sooner. They get to hospice late often because of the immediacy, complexity, and stress of decision-making for a patient with a terminal diagnosis. This is another reason why having the conversation of what you want once you are diagnosed with a terminal illness is so important. Hospice is additional support for the patient and the family at a very stressful time for both the patient and the family. Hospice helps the family as much as it helps the patients.
For more than 25 years, my family has gathered for the annual Thanksgiving discussion about what each of us wants at the end of life. As I reflect on this tradition, what each of us wants has changed as we have aged. The conversation inevitably transitions to what each of us are thankful for in our lives. I am grateful that I know exactly what my mother wants and I plan to honor her wishes.
Having the conversation this holiday season means that you will be likely to make every day count when you can count your days.
Norene Mostkoff is president and CEO of Visiting Nurse Health Systems.
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