Transitioning to End of Life: Home, Hospital, Hospice

“We always knew we wanted her to die at home.”

The mom of a daughter with Sanfilippo talk about the effort they made to get her home from the hospital for the end of her life and making arrangements for her service over the years leading up to her death. "We still have her ashes and I feel no pressure to decide where they go."

How much longer is this going to take? I felt guilty for feeling I couldn’t deal with weeks of her struggle.

The mother of a 13-year old with Sanfilippo speaks candidly about the last few weeks of her daughter’s life, how challenging it was to find the balance between pain management and alertness, accepting that she was dying, bringing on hospice, wondering how long this period would last, being there at the very end, and then the hour or so after. That is an experience a parent should NOT have to live through.

Slowly realizing there is no way we're going to beat this thing.

Parents of two children struggling with a life-limiting disease describe coming to terms with the reality that even with the best medical team, they could not stabilize and save their children, and how exhausting and harrowing the relentless hospital experience was for the entire family, including their older daughter. The dad describes his shift from confidence and optimism to an awareness that his children were suffering.The goal became about getting home.

Hospice streamlines everything.

A mom talks about deciding to put her daughter into hospice care -- "It was a huge reality check." -- and the benefits of hospice. With her hospice team, she decided her care goals for her daughter and which treatments and interventions she would and wouldn't elect. Grief counselor Nancy Frumer Styron talks about how 'hope changes over time.' As it becomes clear that a cure isn't going to happen, the hope shifts and parents hope for other things for their child. A mom talks about how hope and priorities shifted when she decided to stop chemo treatments for her son, and how scary this shift felt for her. "Eventually I realized I can't live my life every day like he's going to die. It took a few weeks and then we started living again."

There’s a shift that happens emotionally.

Grief counselor Nancy Frumer Styron discusses the shift that happens when parents recognize the child isn't going to get better: parents begin to shift to a different way of thinking -- more intense awareness of time, thoughts about end-of-life care. A mom shares her experience when she recognized her son's chemotherapy wasn't working and her recognition that it wasn't going to end well, including the support she received from the palliative care team. "At what point do I take a stand and say 'enough is enough?'"

How long was this part of the journey going to take?

A mom shares how difficult it was to adjust to the uncertainty about how long her son had left to live, after stopping treatment. "How long was it going to take for him to die, and nobody knows the answer. And that was hard." She talks about isolating herself during that time, but how the palliative care team reminded her that her son still had a life.

Instantly I felt I was on the other side.

A mom talks about deciding to end her son's chemo treatments and recognizing the scary implications of that decision. In telling other cancer parents, it made it real, and it made her different. She now needed to find another community of parents with whom she could talk about end-of-life.

When there isn’t more treatment to be provided.

Grief counselor Nancy Frumer Styron discusses how parents may make a decision that they aren't going to provide any more medical care and now need homecare support for their child, such as hospice. A couple shares their story about saying no to surgery and transitioning their son to end-of-life hospice care.

Preparing … or Not.

A mom talks about how she began to "reverse nest" as part of preparing for her son to die, but how, for the most part, she resisted doing any end-of-life planning. I couldn't visualize what I wanted for his end-of-life: home or hospital? friends or alone?

On the one hand you want them to stay with you, on the other hand you want them to have that peace and rest.

A mother of a 22-month old with leukodystrophy talks about the tension between wanting her child to stay alive but also recognizing that her child is uncomfortable and not at peace. “I will need to let her go, and that’s OK.”

“We always knew we wanted her to die at home.”

How much longer is this going to take? I felt guilty for feeling I couldn’t deal with weeks of her struggle.

Slowly realizing there is no way we're going to beat this thing.

Hospice streamlines everything.

There’s a shift that happens emotionally.

How long was this part of the journey going to take?

Instantly I felt I was on the other side.

When there isn’t more treatment to be provided.

Preparing … or Not.

On the one hand you want them to stay with you, on the other hand you want them to have that peace and rest.