We visited a patient last week who is fairly young, has metastatic cancer (“mets,” as it is written in charts) and wants to exercise her rights under the End of Life Options Act. It is my understanding that those working in palliative care do not particularly want to be associated with the suicide of patients and, further, that they believe that in many cases, when someone wants to do this, it is a quality of life issue, such as untreated pain, depression, or anxiety.
So I was touched when our social worker answered affirmatively, saying she would bring more information. In the course of a long and unhurried conversation, it emerged that the patient is dealing with a lot of pain, and that when she is not in pain, she does not feel like using the aid-in-dying medicine. It was neat to see the textbook come to life, or so I thought until I mentioned this to the social worker the next day and she reminded me that actually, what the patient said was that when she’s not in pain, she doesn’t feel like slitting her wrists. She always feels like obtaining and taking the end-of-life medication (which is morphine plus a sedative; 30 pills, give or take) because she wants to be in charge of when the end of her life comes. I was not listening carefully enough. The reason the social worker was supportive is that, most of all, palliative care providers want the patient to get what she wants, when possible.
We also visited a fairly young couple who wanted advice on talking to their two sons about the wife’s cancer. I felt sad about this young woman whose death is likely not too far off, but worse for the partner who will be left behind. It seemed at first that he didn’t want to talk to us, but by the end of the visit, he (and his wife) seemed grateful for Delia’s assistance.
Mid-week, during a time when Delia wasn’t around, I got to go to a care providers’ meeting for a patient whose sister has been at her bedside nearly 24 hours a day. (I know both of them from the soup kitchen; this is not the same as the woman I was mentioning a couple of weeks ago whom I also knew from there.) There was a geriatrician at the meeting who spoke passionately about changing this blind patient’s medication so that she doesn’t sleep 22 hours in a row and about engaging her other senses. Since the patient likes to put things in her mouth (in fact, when she is not sedated, she likes to bite anyone who comes close enough, and tried to tear out her IV with her teeth), this doctor suggested she could be given a necklace meant for toddlers, which is safe to chew on.
Someone asked where you’d get a thing like that and the doctor said, “I was looking on Amazon—it should be at my house when I get home tonight.” Awww! I was extremely touched by this doctor’s refusal to give up on this patient and ordering the thing from Amazon herself. Someone from psychiatry talked about making sure to keep the patient’s blinds open during the day and to have her room dark at night, to get her internal circadian clock working properly again. I’d heard a palliative care doctor speak about this patient as being terminal, which she may well be, but I was touched by this geriatrician’s approach and felt relieved that she is part of the patient’s team.
Delia had told me early in the week that she would be in on Friday at 1 p.m. because she had a presentation to give downtown. On Wednesday or Thursday, she invited me to come to the presentation, so on Friday, I got to report to the Fairmont Hotel and attend a panel discussion on palliative care. I was seated next to a retired plastic surgeon who told me that he mainly worked on congenital birth defects, including covering up exposed bones. He said he liked it because he could actually see what he’d accomplished, in contrast to operating on an internal organ.