Special thanks to Optum Center for Palliative and Supportive Care for making this post possible. All opinions are my own.
My Grandma Carol was what some would call a firecracker. She was funny, witty, stubborn and opinionated. She often spoke her mind, and everyone knew that she didn’t mince her words. I truly wish my husband and kids would have had the opportunity to know her.
Grandma Carol had congestive heart failure. A few months before she died, she’d been having trouble with her legs and feet swelling so badly that she couldn’t put her shoes on. The doctor gave her a pair of stockings to wear to help force the fluid out of her lower limbs. Unfortunately she didn’t understand, that if her legs weeped, she needed to soak them off. She didn’t do that and developed wounds on her legs, which coupled with poor circulation led to gangrene in her legs and feet. She had to be hospitalized when she became delirious from the infection, where she was given IV antibiotics and fluids. The doctor threatened to sue my uncle for medical neglect when he refused to sign a consent for surgery to amputate both of Grandma’s legs below the knee, and the case worker began the process of getting a judicial order to proceed with surgery. We all knew that Grandma would be vehemently opposed to amputation, but in her delirium she hadn’t been qualified to make that decision. Unfortunately, Grandma hadn’t assigned anyone to make medical decisions for her or made her wishes official in writing. Fortunately, the IV antibiotics and fluid restored Grandma’s mental faculties enough that she was able to tell the doctor, “I came into this world with two feet, and by God, I’ll go out with two.” After that, Grandma was moved from ICU to a hospice care room in the hospital. She died within the week.
Most people don’t want to think about their own death, let alone speak about it. We all knew that Grandma would be livid if her legs were amputated. She hadn’t completed any advanced directives, though, and her wishes were nearly violated “in her best interest.” The stress added to the family over fighting with doctor’s about Grandma’s wishes was incredibly saddening. That time could have been spent making Grandma more comfortable. As a nurse, I know that many people think it’s important to share their own wishes for end-of-life care with their loved one’s, but often times it’s a conversation that just doesn’t happen. Whether it’s because they haven’t formalized their wishes or just don’t know how to bring it up. I also know, though, that for those that had the conversation, it made their end-of-life care more peaceful.
Planning for end-of-life health care decisions can assure that medical care preferences are honored, and can keep loved one’s from having to guess about what a loved one would want should a difficult decision need to be made. Here are some simple steps to getting this important conversation started:
- Talk with your loved ones. It’s important to let them know what care you do and do not want. It’s important that they know your wishes and are willing to respect them, and to decide who should make decisions on your behalf in the event you are unable to make them.
- Think about what is important to you. Would you consent to a feeding tube, a breathing machine, or surgery to remove a limb? Do you want your loved one to have leeway to change your decisions?
- Use available resources to alert your loved ones and health care providers of your wishes. You can find valuable resources to help you and your loved ones make decisions more manageable at www.prepareforyourcare.org, theconversationproject.org, and agingwithdignity.org.
- By all means, make it official! Complete an advance directive and be specific about care you do not wish to receive. 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.
Had Grandma completed an advanced directive and assigned a health care proxy, our family could have been spared a lot of heartache. Instead of time being spent arguing with clinicians about what was in her best interest, the time could have been spent with Grandma.
Having these important conversations can go a long way toward ensuring that your wishes will be followed and can prevent a lot of heartache for family members.
