End of Life: Questions and Arrangements

“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."

It's helpful to ask questions about end-of-life. You can never have too much information. It is good to have a plan.

The mom of two children with a life-threatening disease shares some of the questions she had about preparing for end-of-life and what she did: I was grasping at straws about what it would look like. What bed do we lay in? How will we feel after they die - will we still want to lay in the same room? What clothes do they wear? Do you have a person to call that can bring you food?

Some people ask questions. Others don’t.

Grief counselor Nancy Frumer Styron discusses the range of parents' approaches to asking questions about end-of-life: some want to know and ask a lot of questions, others don't.

It’s important to think about your other children.

Pediatric psychologist Nancy Frumer Styron discusses the range of things to consider about child end-of-life in relation to the other children, siblings, including home vs. hospital. A mom shares how she has talked with her son about his wishes when the time comes for his sister's death. "We are as prepared as we can be."

It’s important for children to feel they can talk about it.

Pediatric psychologist Nancy Frumer Styron discusses the importance of children knowing they can talk about their end-of-life. Older children may have a sense of what they want for their end-of-life and arrangements. A counselor can help parents and the child have these difficult but critical conversations. A child has the right to know and talk and share, even as it is heart breaking.

Home or hospital.

Grief counselor Nancy Frumer Styron discusses how parents consider home vs. hospital for their child's end-of-life. "It's a very individual decision."

People need to do what feels right to them.

Grief counselor Nancy Frumer Styron talks about how parents need to do what feels right for them: for some that means making arrangements immediately, for others it means waiting until the time comes. "There isn't a right way to do this." Two moms share their differing approaches to making arrangements.

I knew I wanted to donate his tumor to research.

A mom shares her strong need to donate her son's tumor to research and the difficult questions she asked about what that meant. "I felt great comfort and relief in this."

I have asked every possible question.

A mom speaks frankly about her need to ask every possible question, including the especially difficult ones, such as what her child's body will look like after death and where the body will be at the funeral home. "At first the answers were too scary to ask the quesitons, but I knew I had them in my head and eventually I got to the point where I finally I was about to ask."

A couple disagrees on open or closed casket.

A couple shares how they started making arrangements for their child's death shortly following his diagnosis, and disagreed on this one major point. The father talks about the importance of having the casket open: "I was a proud father and wanted to stand next to him. I wanted people to see my boy."

What was most helpful was the talk around creating the DNR.

A mom of a son with several progressive disorders talks about the value of having the conversation about the DNR.

I didn’t plan anything.

A recently bereaved mother and father talks about how they didn’t plan much ahead of time, but how the services came together beautifully after their son’s death and there were benefits to waiting to plan.

When we can educate families about what to expect, they are less fearful.

A palliative care social worker talks about the value of having end-of-life conversations with parents earlier in the journey: it can be liberating for parents and helps to minimize their fear and dread.

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

It's helpful to ask questions about end-of-life. You can never have too much information. It is good to have a plan.

Some people ask questions. Others don’t.

It’s important to think about your other children.

It’s important for children to feel they can talk about it.

Home or hospital.

People need to do what feels right to them.

I knew I wanted to donate his tumor to research.

I have asked every possible question.

A couple disagrees on open or closed casket.

What was most helpful was the talk around creating the DNR.

I didn’t plan anything.

When we can educate families about what to expect, they are less fearful.