Family Meeting Minutes

This afternoon we were fortunate to have a family meeting coordinated by a woman who works as a social worker for patients receiving palliative care services (stand-by for definition). It included Mom, Paul, Gwennie, the social worker, the nurse case manager, and Dr. Donadio.

At this stage, we've determined that the systemic chemotherapy is doing more harm that it is good. It was started initially to keep the systemic cancer (small tumors that have emerged here and there in her lymph system) at bay and prolong her life. We knew very well that it would not likely cure the cancer. The systemic chemotherapy is no longer on the menu for my mother, thank goodness. Hopefully no more mouth sores, sore throats, low blood counts, and all that comes with it.

Our focus is shifting towards "comfort-based care," with the objective that if we can not cure the cancer, at least we can keep Mom as comfortable as possible so she can enjoy her life.

There are two options: palliative and hospice care. Many think they are all-encompassing, but there are subtle yet distinguishable differences.

Palliative care means that the focus is still the person's comfort, however some interventions can still occur if the patient chooses. For example, in Mom's case, if she wanted to continue receiving intrathecal chemotherapy in her Ommaya port, or be able to be hospitalized for stabilization, etc., she would be considered palliative.

Hospice is a service that is offered to keep patients out of the hospital, either at home or a skilled-nursing facility, and to manage their symptoms in an effort to keep them comfortable. No interventions are done to prolong their life, such as feeding tubes, breathing machines, etc. If it does not enhance comfort, it is not done.

None of these decisions come lightly. Mom's positive attitude and strength thus far has been astounding. There are no words to describe her perseverance. We all want her to be the miracle, no one more than herself, but her cancer has a life of its own, and at what length does she want to go to fight what we're being told is incurable?

The last week has been peppered with conversations and tears. My mother fears nothing more than feeling she's failed, or giving us the impression she's given up. She always goes back to Gwennie, who being just 20 years old, is being cheated out of important years with her mother. But we do our best to remind her that we're not losing a mother, we're gaining the honor to share in her final days of life. She reminds us that if a miracle will occur, it will happen with her girls at her bedside, and that's what she'll get, miracle or not.

Her care is complex, and along with the decision of whether to continue the intrathecal chemotherapy or not, we're grappling with whether she will receive the best care at a skilled-nursing facility or at home. I know at first glance it seems entirely obvious. Believe me, I am in the biz. However, in the team meeting today we were able to seriously dissect the pros and cons of both going home or not, and the answer is not so black and white.

What muddies the water is that we happen to have a world-class skilled-nursing facility in the neighboring town, McLean. They've been providing us with visits at the house since September and we've been thrilled with their professionalism and attention to detail. If we didn't have a top-notch facility at our finger tips, bringing her home would be a no-brainer.

If Mom goes home, she'll receive visits from McLean as she did before, but now that her needs are so significant, we'll be responsible for hiring around the clock care to ensure her safety. By safety, I mean, both physical and medical. She is already experiencing some skin break down, and her medication list is intimidatingly long. Having people in the house who are impeccably qualified is a must (enter ACDC daughter/nurse/now hiring manager). She gains the opportunity to stay in her home that she knows and loves. To go to McLean, she has physicians, nurses, and nurse's aids at her finger tips, not to mention a private room, with an attached handicap bathroom, a small veranda which looks out on to the woods, etc. But it's not home. And as much as they said, "move in, bring art work, your dog, your friends, your music, etc." it is still not home.

So we have to flesh out a few things. Where would Mom feel safest? How do we ensure she gets the best care? Who will manager her needs best? And even though Mom is the priority, what is best for her family?

We shall see. She's not being pushed out the door of the hospital. Over the weekend she started having diarrhea, nausea, vomiting, and painfully annoying heartburn. We won't be heading out until her symptoms are beautifully controlled and we have a safe, thorough plan in place.

Now the room is quiet, free of visitors and personnel. She's rubbing her temples with her headphones on, which signals to me that she's half way through her meditation. Nothing stops this woman from doing what she loves, not even cancer. In the meantime, I'm going to have faith that Mom will make decisions for her future based on what she feels is best for herself, and will in turn, be best for the rest of us.