Seeing how he and his family were treated in the hospital when he was diagnosed with a terminal brain tumour was pivotal in my decision to pursue my medical training. I had already decided that I really wanted to be a physician, but seeing how much my family needed to know what was happening in their decision making process, an advocate who spoke the language of the hospital. The docs who were speaking with the family were patient, kind and thorough. I'm not sure there could have been better people to walk my cousins and aunt through the difficult decisions they needed to make. We were lucky/blessed that these were the docs we had for this process.
My family stood vigil over my uncle and his family. We took over the entire waiting room and, not to put too fine a point on it, harassed the staff with our questions. There were arguments among the family about withdrawal of care, whether or not this is what my uncle would have wanted. It was both an awful time for us and a fabulous time. We were close and pulled apart at the same time.
The night before care was withdrawn, the family threw a SuperBowl party for my uncle. Pizza, beer, football being thrown around.
On the day of his funeral later that week, I was very upset. Not just for the loss of my uncle, but because I wasn't ready for losing this generation of my family. I think I've mentioned before that I have a large family. My younger brothers, all much larger than me, surrounded me in a circle and took turns rubbing my back and comforting me. They made me feel safe.
My aunt did not take her husband's death well, as anyone would expect. Unfortunately though, she didn't have the resources I seemed to have nor a physician who saw the warning signs of someone who was not coping well with loss. Her daughters did all they could to help.
I always like to think that I learn from tragedy. So what I have learned from my uncle's illness and death is the following:
1. Families are complicated - never assume that the person standing in front of you speaks for the entire family.
2. Families deal with death in different ways. Mine is very used to family members dying - a side effect of having so many members. We know that touching one another and the dying person helps us get through. We know that bringing "busy work" keeps us grounded when our world is spinning out of control. We know that there is often a magical time just before death when the patient becomes lucent, and needs to speak with their children/partner so whoever is with the patient needs to go and get them for this window is fleeting.
3. Families will have a lot of questions. They need to know the steps in what is happening next and how to prepare for the death itself. They will also ask these questions again and again. It's tempting to say "I already told ... this", but imagine this is your family. You need to be patient and explain it again or even better, have a large family meeting to explain it to the entire family at once, answering questions and decreasing the misunderstanding that can lead to family conflict.
4. Sometimes those closest to the ill member need to be told, lovingly, to get their butts home to bed.
5. Since these members of the family are spending so much time in hospital, offering to clean their homes, make some casseroles for the freezer, do their laundry can be the best way to help a family going through a death.
6. Laughing is OK. So is crying. Showing that you care about the ill patient and their family is most important. While you never want to presume that you are feeling more than the family, letting the family know that their grief and emotions are justified can be helpful. It should never be easy to withdraw care from a patient. Never, no matter how ill the patient is.
7. Never presume to know what a family wants or needs. Ask. A SuperBowl party meant quite a lot to my uncle's family, brothers and sisters. It made them feel a bit of control over this completely uncontrollable thing that was happening.
8. I've learned that I'm not alone. I have brothers who love me as much as I love them.
9. The family of a patient who has had to have care withdrawn is particularly at risk and needs to be cared for by their family and their physicians. Judgement of the choices they make to deal with the pain they are feeling is not appropriate and will not help. There will be times that tough love may be needed, but gain the respect of the family and try to understand their choices before pushing your own agenda.
Though all of this learning came from his illness and death, I think what my uncle would appreciate most today, is that they were good enough to throw a SuperBowl in his honour.
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