What we can learn about comfort care from Barbara Bush,
Americans were saddened to learn that former first lady Barbara Bush passed away on Tuesday. Mrs. Bush, 92, was with her husband, former President George H.W. Bush, in Houston. She had decided to seek “comfort care” instead of additional medical help to treat congestive heart failure and chronic obstructive pulmonary disease. Mrs. Bush’s example hits home with many families who are dealing with end-of-life issues for loved ones and what it means to stop trying to fight terminal illness. To learn more about how to have these family discussions, the Orlando Sentinel Editorial Board sought out Chuck Lee, president and CEO of Cornerstone Hospice and Palliative Care.
Q: What does it mean to receive comfort care only, such as Mrs. Bush? A: The decision to receive comfort care when faced with a terminal illness is certainly a difficult one. In this situation, first lady Bush and her family have likely determined that efforts to cure her disease may only prolong discomfort, with little or no chance of extending the time remaining. Instituting comfort care, which is the mission — and really the definition — of hospice, means that a patient’s physical needs and comfort as well as their emotional and spiritual needs are the priority. The patient may only receive medication that helps relieve pain or discomfort so that he or she can make the most of the time that remains with the ones they love. At the same time, the patient may seek guidance from bereavement counselors and clergy to address anxiety and sadness during this most difficult time.
Q: Why is it important to have conversations about end-of-life wishes with your loved ones? A: Talking with your loved ones openly and honestly about your wishes for end-of-life care can be one of the most important things that you’ll do for your family. First lady Bush has a strong family around her, and has made her wishes clear, but sometimes things can happen suddenly, and it’s important for family members to know in advance what a person prefers for end-of-life care. When in a medical crisis, you may not be able to communicate your wishes. By expressing what matters most to you in advance of that crisis, your loved ones will have a shared understanding of your preferences and will feel better knowing what decisions you would want them to make.
Q: What issues and decisions should people consider when thinking about what they want their end-of-life to be like? A: There are a number of things that you may want to discuss with your loved ones. From major points like who should be designated to make health-care decisions if you are incapacitated, or how you want pain to be controlled, to personal questions of whether you want your pet on your bed with you. Several resources are available to help develop your advance directives. For example, Cornerstone Hospice distributes Aging with Dignity’s Five Wishes document to patients entering our care as well as at community events. This document, which meets legal requirements for an advance directive in Florida, walks you through a series of questions that helps you express how you want to be treated if you are seriously ill and unable to speak for yourself. Once completed, you have a legal document to share with your loved ones and doctors, so they understand your desires and are prepared to accommodate should the time come.
Q: When it comes to end-of-life care, what concerns do most people express? A: First is location of care. According to a recent national Gallup poll, about nine out of 10 adults would prefer to die at home, free from pain, surrounded by family and loved ones. At the same time, people are concerned about being a burden on their loved ones who would potentially care for them. That’s where hospice care can be a real blessing, with a comprehensive care team available 24-hours per day. But by expressing end-of-life wishes with loved ones, a person establishes guidelines for the quality of life he or she hopes to have in the final weeks and months.
Q: How do the costs of comfort care compare with aggressively treating diseases in old age? A: Comfort care is dramatically less expensive than aggressive care, but the real question should not be price, but what’s appropriate and what care aligns with the person’s wishes? For families who want comfort care support, they should know that hospice care is covered by Medicare, as well as by most private insurers. Cornerstone Hospice, a not-for-profit, will admit every appropriate patient, regardless of their financial situation or whether someone has insurance. Knowing that it’s a difficult topic to broach, how do families start the conversation with their loved ones? The same resources that help you determine your end-of-life wishes often have suggestions of how to prompt the difficult conversation. Complete the Five Wishes document as well and share it with your family, letting them know that you have established guidance for them in a legal document. The website TheConversation Project.org has a starter kit to help individuals determine the best place and with whom to have the conversation. You start by visiting with your attorney to complete your will, health surrogate designation, and durable power of attorney. It’s a difficult discussion, and many people don’t want to have it, but we hear over and over, in retrospect, that people wish that they had done it before it was too late.
Q: Once a terminally ill family member has made wishes known, what’s the next step? A: Once a loved one’s wishes have been made known, make sure they are in writing. Share the documents with appropriate family and friends as well as with clergy and the loved one’s medical team. Acknowledge to your loved one that you understand and respect his or her wishes, and that you will honor them. Then make sure that you do what you can to surround your loved one with love, comfort and support to ease this last, difficult journey.
First lady Barbara Bush has a strong family around her, and has made her wishes clear.