Palliative Care: Having the Conversation

Sunset on Payette Lake

This is the last in my series of posts on palliative care.

It’s the hardest conversation you will have in your lifetime. Recently, I’ve been following two parents on instagram who are giving their young daughter in her last months, weeks or days with their family, a peaceful and loving ending, showered in care and honor. Their daughter has terminal cancer and she championed treatments for years. They finally chose to listen to their young child, and let her choose to stop her fight. She was done. There are many parents sharing their journey’s online and off. This is the last post of my Palliative series, this series was inspired by all the parents and children who have shared online their experience at the end of ones life. Many feeds have hope and most end with their family sharing their loved ones story. Some of you might see these stories as an invasion of a dying persons privacy, but many of you might find hope, strength, information and even advice for when the inevitable comes to all our doorsteps.

The conversation about the end is the hardest task or chapter in the decline of your loved one and a key step in pallative care. Having a plan charted in your adult years. A living will or advanced health directive are the most common legal documents you can have drawn up. If your loved one is already in decline, updating these documents can take a lot of time, and time is not on your side during the palliative care period. It’s important to always have conversations with loved ones about all legal documents, especially when you are listed as a trustee or health care agent.

My parents finally got their trust setup around 2000, 9 years before my father passed. When my mother started to experience some health problems before COVID and the return of CHF, I realized her legal documents were not really setup correctly. And the information was severely outdated. We had to have all her legal docs updated during the COVID pandemic. All of the info update and final wishes were ironed out, correctly, this was around the time she started going to the hospital multiple times. Sitting in the hospital, conversations about palliative care do come up and more naturally. At times, your loved one will be guarded but they will open up eventually. Especially if their hospital stay is long and things are not improving as quickly as they would hope.

Then there are the times the conversations appears out of nowhere. On a drive home, sitting at a holiday table eating dessert, every family’s experience is different when it comes to having these conversation. I’ve experienced both my parents, and even sitting up late at night while feeding the little ones. Yes, in the moment, it’s hard to see your loved one in a vulnerable moment. The relief these conversations provide on what to do when the time comes, is monumental for fears and anxiety. We have our own plans, and we have each chosen the path we hope is taken. In terms of that path being taken, that’s a whole post in itself. And a post I don’t plan on writing.

Sometimes these wishes are not always listed on a legal document. Sometimes it’s just a simple request shared over and over in small conversations. As I mentioned before with my mother’s decline. Her number one request, over and over, was to be at home when she passed. She didn’t want to be in a hospital or care facility in the end. Whether you are dealing with a hospital visit or in-hospice care, being open with the caregiver and staff, about your loved one’s wishes is very important. If your loved one is in the hospital, your biggest advocate will be the social worker who is assigned to your loved one care team.

Keep in mind, social workers aren’t available 24/7 like the hospital staff. It’s important that when you do meet with your social worker, you are clear about the care directives and ask to see proof they’ve documented the requests. I’ve learned this from personal experience. I believe in one of my posts Ive shared the time I was on top of Brundage Mountain in Idaho arguing with a social worker, who was perfectly happy with not following orders. And making new orders without consent, causing a medical emergency. I digress.

If you have siblings, and even though you might be the primary caregiver or have power of attorney over the directive, being open with your siblings is very important. I’ve watched in the past how, decisions made about care, weren’t shared in a timely manner, causes issue with  loved one’s who are not in a care providing role, can react by countering, in hopes to buy more time with the loved one. Try your best to communicate ahead of time of your loved one’s requests, or if you are making a change or adding a new directive that was not officially decided. Reach out to your siblings first, no matter their involvement. It’s a stressful time for everyone, and surprises can elevate emotions and possibly hurt relations with loved ones. The same goes when you are caring for a spouse, Including your children in the conversation or making them aware helps more than you would expect with the grieving process.

On the flip side of this flow of communication, my number one piece of advice. Share information with no expectations. If you need someone to help and step in, ask them, but don’t expect to get the response you want. We all deal with death in our own way. What makes sense for one, doesn’t have to make sense for others. Find your own peace, and focus on that, and let your expectations of others response to the process, be something you need to accept. But don’t pressure yourself to understand their chosen path in dealing with death.

As I mentioned the conversation about the palliative care process is not an easy one. With rapid decline, it’s even more difficult, having small conversations helps control flood of emotions. My final piece of advice I have, give yourself time to find your peace in the decisions you make. That peace doesn’t have to happen right away. And you might need help to reconcile peace over time. Reach out to a therapist, or even a friend to process it all. After my mother’s passing, I had a couple of friends that I spoke about the process with while on walks. Talking helped me settle the anxiety about whether or not I made the right decision. My spouse was also a great support as the years passed after her passing. Talking about the palliative process with your spouse is also a great way to open up about your own personal wishes. I’ve made a very a good case as to why I want to be cremated when I pass and about why I chose to have a DNR. These are big decisions you should have, but be patient, over time they might change. Keep the conversations going.