Conversating about end-of-life wishes with our loved ones, especially our parents, can be emotionally challenging. However, it is an important discussion that can provide comfort and understanding and ensure their wishes are respected. For this blog, we talked with Cathy Newhouse-Carillo, CEO of Hospice Homecare in Arkansas, to discuss normalizing conversations about the inevitable end-of-life.
Why Discussing End-of-Life Wishes Matters:
Engaging in conversations about end-of-life wishes may initially seem daunting, but it is crucial for several reasons.
First, having a conversation allows your loved ones to express their desires regarding medical care, personal preferences, and final arrangements. Knowing their wishes helps ensure their decisions are respected. This cannot be overstated. Having a plan written and made legal ensures your loved ones can exit on their terms.
Secondly, discussing end-of-life wishes can relieve you and your parents emotionally. Openly sharing fears, concerns, and desires can foster understanding and support among family members, reducing anxiety and promoting a peaceful transition. Having a conversation about how one wants to depart ahead of time leaves room for family members to be present when the time comes.
Newhouse-Carillo pointed out that "there is a lot of power in a plan," as a plan can help prevent any unwanted treatments or decisions made under pressure. The plan becomes a roadmap, helping guide all decisions made throughout the difficult process of ushering a loved one through the end of their life. This roadmap puts less of a burden on family members, not only emotionally but financially as well. Sometimes decisions can feel pressured when in that dreadful moment in the ICU, which can leave families with overwhelming burdens to bear.
Understanding the Role of Hospice and Palliative Care:
Hospice and Palliative care plays a vital role in providing comfort, support, and dignity to individuals during their final stages of life. It focuses on enhancing the quality of life and alleviating physical and emotional suffering. When discussing end-of-life wishes, educating your parents and loved ones about hospice care and its benefits is essential.
Hospice and Palliative care can be provided at home, in a specialized facility, or hospital. It offers a multidisciplinary approach involving physicians, nurses, social workers, chaplains, and other professionals working together to address physical pain, manage symptoms, and provide emotional and spiritual support to patients and their families.
"It's about quality of life," Newhouse-Carillo said repeatedly during our conversation. Often, hospice care can be seen as giving up. Still, Newhouse-Carillo clarified that hospice is not giving up–it's "about choosing to fight differently." She acutely describes most people's relationship with hospice care as "late-in-the-game death" in which an individual is "pumped" with medication to ease them through their last days. This can happen in the home or a hospital. The stigma is that hospice care is about pumping someone full of drugs and then abandoning them. Newhouse-Carillo was adamant that this is not the case–especially if someone is prepared with an end-of-life plan. She hopes that as more people learn how hospice and palliative care can help them, the sooner an end-of-life plan is decided, the more peace one can have.
Many people are hesitant to discuss end-of-life wishes because they fear giving up in the end, and the current narrative around hospice care tends to treat it as a last resort. But really, according to Newhouse-Carillo, it is about granting peace and comfort in letting individuals have death go their way, helping them to cross the bridge in honor rather than under pressure.
Discussing hospice care with your loved ones can help everyone in your circle understand the options available and make informed decisions about the type of care they prefer. It can help them find peace in a moment that may seem terrifying and take back some power over their life as they prepare to depart.
Approaching the Conversation:
We hear you saying, "Well, that's all fine, but you don't know my family. They would never discuss their deaths with me–I can't even broach the topic of a retirement home with them!" Which is fair. Death is a taboo subject in American culture, with many of us preferring the sanitized versions of it featured on television series like Grey's Anatomy. Thinking about death in your own life is entirely different, and having such a conversation can be terrifying.
A quick case study: The town of La Crosse, Wisconsin, started talking about death and watched a profound change come over the city. After years of sitting with grieving families in the wake of medical tragedies, medical ethicist Bud Hammes of Gunderson Lutheran Hospital began asking if there was a better way to approach death. Seeing patients who had often been sick for years and needed to make difficult decisions in their last moments prompted Hammes to begin helping patients have the conversation sooner. He trained hospital nurses to ask if people would like to fill out an advanced directive and started asking questions about what patients wanted before the moment of crisis. Around 96% of the town now has advanced directives, and the city has seen healthcare costs drop significantly–mostly because people are saying “no” to expensive treatments. And it's all because people began talking about death. It is profoundly simple and yet vastly complicated. How do you even begin such a conversation–especially with someone you love deeply?
Newhouse-Carillo’s honest answer was you just have to start.
Here are a few tips to help guide the discussion:
Choose the right time and place: Find a comfortable and private setting where everyone can feel at ease and focus on the conversation.
Be a good listener: Give your loved ones the space to express their thoughts and emotions. Acknowledge their fears, concerns, and desires without judgment.
Use open-ended questions: Encourage meaningful conversations by asking open-ended questions that invite detailed responses. For example, "What are your thoughts about the type of care you would prefer towards the end of your life?"
Show support and understanding: Reassure your loved one that their wishes matter and that you will respect and advocate for them. Validate their emotions and provide comfort during difficult discussions.
Frame it as a gift: Remind your loved ones that this can be a gift to their families. Very often, reluctance to discuss death comes from a fear that it means giving up. Framing an advanced directive as a gift can help alleviate this fear. Instead of giving up, they are leaving their families with room to grieve and honor them as they go without needing to make hard decisions in a hospital room.
Remember, this conversation is fraught with emotion. There are no simple answers and no easy ways to have this conversation. But the peace of mind that can come from knowing is worth any potential awkwardness in the moment.
Five Wishes Document
Death is not an easy thing. It never has been, and it never will be. But as Cathy Newhouse-Carillo made abundantly clear to me, it is not something we need to fear. There is a way to approach death that provides us with honor and comfort. It is in stating our wishes before the decision comes, in talking about how we want to be in our final moments.
On a more personal note, I am a young 26-year-old female. I am about as healthy as one can be at my age, and I live a very active lifestyle. I have a good 60 years ahead of me--if all goes according to plan! But that does not give me a guarantee to every day. Headlines make it clear that tragedy occurs constantly, and young, healthy people can pass away in devastating accidents or medical emergencies.
This once caused me fear. But now, I know there is a way for me to ensure that even if the worst were to happen, I could still leave this life with dignity. Newhouse-Carillo introduced me to a document known as "The Five Wishes" document. This document is a valuable resource for structuring conversations about the end of one's life. It goes beyond legal requirements (although it can be made a legal document) and allows individuals to express their preferences for medical treatments, personal matters, and final arrangements.
The document includes the following:
The person you want to make care decisions for you when you can't
The kind of medical treatment you do or do not want
How comfortable do you want to be in death
How do you want people to treat you
What do you wish your loved ones to know
It is a document that helps give you agency over your death and helps ensure that you are leaving the way you would want to. It helps to put death on your terms.
I have begun filling this document out. Death is not something I want to fear. I want to live my entire life, however many days I have, in peace, knowing that my wishes will be respected and honored and that my loved ones will not be forced to make excruciating decisions on my behalf while they are grieving too.
Because I am filling it out, I am also broaching the topic with my loved ones. It has become a conversation with my husband and family, and I have been astounded by the depth of discussion and the connection it has fostered. Death has brought us closer, something I never thought possible.
After my conversation with Cathy Newhouse-Carillo, I have learned one important thing: Death does not need to be something we fear. We can face the inevitable end of our lives with confidence and assurance. This may sound like something complicated and daunting. Still, the answer to our fear is amazingly simple and incredibly human: Talk about it. Connect with your loved ones about this topic. Learn what they want, make it official, and feel the fear of death melt away.
Hospice and Palliative care workers are so important. They are on the front lines of this important cause. They interact with individuals and families, providing medical care and education while helping to honor life. It is a profoundly sacred job, and I am glad there are people in this world willing to sit in the space between life and death and help usher individuals on with dignity.
At Cygnet Health Recruiters, we are dedicated to finding the perfect job in healthcare for everyone. If you have ever considered a role in Hospice and Palliative—reach out today! Cygnet can help you find the perfect home health and hospice job.