How can I approach the hospice discussion?
The primary physician may recommend hospice when the time is right. But as anyone who has faced a serious illness knows, patients and family members must act as their own advocates at times in order to receive the care they need and deserve. It is always appropriate to engage your physician in conversations about “the goals of care” at any point in your therapy.
The final months and days of life are frequently marked by strong emotions and hard decisions. Talking about hospice, even with those closest to you, can be difficult. Here are some tips to get the discussion going.
For Patients Speaking to Families
Education is key. Educate yourself first. By now, you’ve probably done some research on this website. It might also be helpful for you to learn some common misconceptions about end-of-life care, as your family may be misinformed about the realities of hospice. View our video on dispelling hospice myths.
Determine what your loved ones know. Before bringing up hospice, make sure your loved ones have a clear understanding of your health status. People handle difficult information in different ways. If family members are not accepting or understanding of your prognosis, you might want to have your physician or clergy or a trusted friend speak with them on your behalf.
Discuss your goals for the future, as well as theirs. As a patient, your greatest concern might be to live without pain, or to stay at home, or to not become a burden. Ask your loved ones what their concerns are when they consider the coming days, weeks and months. Explain that hospice is not giving up. It is an active choice to ensure that everyone’s needs are met.
Take initiative. Remember, it’s up to you to express your wishes. Sometimes, out of concern for your feelings, your family or loved ones might be reluctant to raise the issue of hospice for you.
For Families Speaking to Patients
Education is key. Educate yourself first. By now, you’ve probably done some research on this website. It might also be helpful for you to learn some common misconceptions about end-of-life care, as your loved one may be misinformed about the realities of hospice. View our video on dispelling hospice myths.
Ask permission. Asking permission to discuss a difficult topic assures your loved one that you will respect his or her wishes and honor them. Some ways of asking permission are: “I would like to talk about how we can continue to ensure you get the very best care and attention as your condition progresses. Is that okay?”
Determine what is important to your loved one. Ask him or her to consider the future: “What are you hoping for in the coming days, weeks or months. And what are you most concerned about?” They might express a desire to be comfortable, to stay at home, or to not become a burden.
Discuss hospice care as a means of fulfilling their wishes. Now that your loved one has told you what is important to them, explain that hospice is a way of making sure their wishes and desires are met. For some, the word hospice evokes a false notion of giving up. Explain that hospice is not about surrendering to disease or death. It is about bringing quality of life to their remaining days, weeks or months.
Assure the patient that he/she is in control. Hospice gives patients options: the option to remain in the comfort of their own home, the option to take advantage of as much emotional and spiritual support as they desire, the option to have their own doctor actively involved in their care. Reassure your loved one that you will honor his or her right to make choices about what is most important in their life.
Be a good listener. Keep in mind that this is a conversation, not a debate. Be sure to make an effort to hear what the other person is saying. Know that it is normal to encounter resistance the first time you bring up this topic. But if you listen and understand your loved one’s barriers and reasons for resisting hospice, you will be better prepared to address and ease their concerns in future discussions about end-of-life care.
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