September 2013

Needing the Best Care Possible

I keep thinking of a 30 year-old woman in need of my bone marrow. Back in March of this year, I received an email from the National Marrow Donor Program. I had registered with the program 16 years earlier when we did a donor drive for a patient here at Arkansas Children's Hospital. Since that time, I had never received any communication to indicate that I might be a match for someone in need. In March I called the number on the email and was told that I might be a match for someone in need of a bone marrow or stem-cell transplant and was asked if I was still interested in being a donor. I was, so I was asked to complete an online questionnaire and provide some updated health and contact information. I had a few more communications and then I was moved to the next stage as I gave additional blood to be tested in early May. By that time, I had been informed that the person in need of a donor was a 30 year-old woman. I was told that I would hear something, one way or the other, within 8 weeks about whether I would move to the next step of having a physical completed. I was also asked about my summer travel plans and availability. When 8 weeks passed, I was told that I was "released." For some reason, the 30 year-old woman was not in a place to receive bone marrow or stem cells. Perhaps she had an infection or hadn't been able to get into or sustain remission of her disease. Maybe there were insurance problems or other practical concerns that had not been resolved. Whatever the case, I was released and there was (is) only about a 10% chance that she will be in a place for a transplant and I will be called to continue the process. It appeared that had the donor been ready for transplant, I would have gone to the next step of getting a physical and then, if all looked good, gone on to donate bone marrow or stem cells.

Just down the hall from my office is the office of our hospital's representative from the local organ procurement organization. We had talked about the possibility of me being a bone marrow or stem cell donor when the request came in March. She was supportive and encouraging and she joined me in the hoping/waiting process. She knows, more than most, about the power of donation. Unfortunately in her line of work, donors usually have died before donation takes place. In contrast, here was a chance for a live person to donate a potentially life-saving part of themselves with little risk of health and a small price of time and inconvenience. I was disappointed to tell her that I had been released and it looked like it was not going to happen.

Every day I walk by the organ procurement office and think of that 30 year-old woman somewhere in the US who needs a bone marrow or stem cell transplant, if she is still alive. I wonder if she is married or has a partner, if she has children of her own, what kind of work she did, and how long she had been fighting her illness. Are her parents alive and involved, does she have brothers or sisters, and what about her friends and community? If she died, was it a gentle death? Did she have the conversations needed to be as prepared as she could be and to be able to think about and express how she wanted her life to be until it ended? How faithful and skilled was her healthcare team at being present in her suffering and minimizing what suffering there was in her body, mind, heart and soul? Is the fight over or is it continuing? Unless that 10% thing happens, I will never know, but I will wonder.

How it goes at the end of our lives makes so much difference. Obviously, it makes a difference for the one who is dying. In many places in our lives we get second chances and do-overs, but how we live our final days is not one of those places. We need and deserve to get excellent guidance and support to make it as good as it can be or perhaps as least bad as it can be. The dying hold a special combination of vulnerability and dignity that calls the rest of us to high levels of care and respect. We will all do our dying one day and much can be judged about the character of a person, family and culture by how we care for the dying…and they are everywhere even when we don't see or acknowledge them.

But it's more than just the person who is dying. How those last days, weeks, or months go for the person dying stays with the living witnesses and companions. One of the biggest challenges of life is to be present in the suffering of one we love and experience the helplessness of not being able to take away the pain and loss. We wonder over and over about whether there is anything else we can do, and if we are in a position to make significant choices for the dying person, we wonder if we made the best choices. These questions are reluctant to leave us and can be late-night visitors as we lie awake and wonder if we did the right thing. Here it is important that in the judging places in our hearts, we can give the verdict that we did good and right things for our dying one. This trial may need to be repeated many times and the ability to find absolution is a welcome gift and solace in our grief. We need to know and believe that we responded justly with both faithfulness and mercy.

I hope that "my" 30 year-old in need of a transplant got what she needed and deserved whatever the course of her illness. And I hope that those who loved and love her still can find refuge in knowing that all that was humanly possible to heal and give comfort was provided. To do so affirms and promotes life, both for the dying and for the living.

Greg Adams
Director
Center for Good Mourning

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Lessons from Lions: Using children's media to teach about grief and mourning is a creative resource for helping children understand ways to cope with a death in their lives. It is available only from the Center from Good Mourning for $3.00 per copy, plus shipping and handling.

In Arkansas we have Good Mourning Grief Support Groups, Alliance for Grief and Loss programs, a walk and a training for suicide prevention and a support program for those impacted by suicide. Also available on the web this fall are a good variety of grief-related webinars from national organizations.

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