For many individuals and their families, conversations about end of life planning and care are uncomfortable, and often these conversations never take place.
I spent the last 15 years of my nursing career working as a hospice nurse. I have walked into many chaotic situations of terminally ill individuals and their families because such conversations had never taken place. Too frequently, I arrived at homes as patients were within minutes of their last breath. Too frequently, I heard from family members, “We wish we hadn’t waited so long to bring in hospice care.
I understand many of the reasons individuals and their families are reluctant to have a conversation about end of life. They may not be ready to give up hope. They may be in denial. They may just not know where and how to begin such a conversation.
My mom died about two years after being diagnosed with lung cancer at the age of 78. Several times, across the months of mom’s terminal illness, I attempted to talk with her about her wishes. She simply would not engage in conversation about her care and wishes. My dad and my seven siblings were also reluctant to talk about her impending death. One of my brother’s was a paramedic, and he was adamant in continuing aggressive care for her. After my mom died, my dad said to me, “ I didn’t think she would die so soon.”
Fifteen months after my mother’s death, one of my sisters died of breast cancer at the age of 56. She did have conversations about her wishes and care. She would often talk with me about her decline. Her husband told me they talked frequently about her care and wishes. It was not always easy to hear her talk about her death, but I was so grateful she did. She did it her way. I only regret that her physician did not get on board with hospice care sooner. My sister died four days after she signed her consent for hospice care.
Two months after my sister’s death my dad died. Dad did talk about his care needs and his death. One day I asked him, “Dad would you be surprised if you were here to celebrate your 90th birthday?” Dad replied, “I am an old man. I have served my purpose here. My children and grand-children are doing well. I am proud of my family. I have lived a good life. I miss your mom. I am ready when the good Lord is ready for me.” My dad and I talked at length, then called my brother, who dad had designated as his power of attorney and talked some more. Dad made the decision to leave his home and move to a small board and care home. He visited his physician about two weeks before his move and requested hospice care. My dad was 86 years old when he died of chronic lung disease and heart failure.
Recently, my physician asked if I had made end of life care decisions. “Yes, and I have it in writing, ” I replied. “Great, and when was the last time you reviewed it with your children?” she asked. She then told me she was asking these questions yearly with all of her patients. I was so happy to hear she was asking and even reminding her patients they needed to be reviewed from time to time.
I share my stories about end of life conversations because I care about you and your family.
I urge you to have the conversation as it relates to you and to those you love. These conversations can be difficult and uncomfortable, however I believe you will not regret having them. Please do not wait. Please reach out for help if you need guidance or direction to make the conversations happen. Below are a few resources I believe can begin to assist you.
I wish you and your family loving conversations.
I think this is a great idea for doctors to ask if you have end of life care decisions! It is uncomfortable, but my husband and I are now realizing that this is something that we need to do now.
Debra, my parents were proactive in obtaining long-term care insurance in an effort to shield my brother and I from having to take on too much to care for them. Yet, we did not have deep conversations about specifics. In their later years, they were in no shape to have these conversations, and I took on the caregiver role, which took its toll. I will certainly get a plan in place for myself. Thanks for sharing this topic.
I had these discussions with my dad. My mother had them reluctantly but she was very stubborn about what she did and didn't want to happen. She also had some incorrect notions about how much my father could help her...
My husband and I have started having these conversations as well. We haven't written them down yet so we need to get that done.
Great post!
Excellent!! Those who talk about are happier for it.