Jackson explained: “If I do the first assessment, it’s likely I would be the one giving the drugs. Prior to seeing the patient, I do my usual review of the cancer history, looking at pathology, radiology and clinical notes to check for disease progression, treatments received – those elements that indicate irreversible decline. During a patient interview, I inquire about the patient’s suffering, the personal values and the purpose – is it the agony of intractable symptoms or the anguish of exhaustion, loss of meaning, emptiness of waiting to die? Are there obvious external pressures or vulnerability issues to check? Sometimes patients want to know more about what it’s like to die – in order, for example, to make an exit plan in case of future suffering, to know what symptoms can be managed with what kind of support, especially where palliative care services are available, with or without MAID. We usually keep the ‘10 clear days’ requirement between written request and MAID procedure, to allow opportunity for reflection, all part of the ‘contemplation phase.’ There is a second assessment by a different physician – again to ensure the requirements of MAID are being followed. This assessment may be more or less involved than the first review, depending on whether there are additional logistical issues to be addressed.”
“Advanced directives are, at present, not considered an appropriate approach to access MAID. There must be a request in writing with two independent witnesses and the inevitable AHS forms must be completed,” Jackson said. “We want to maintain respect of the medical and lay community, recognizing that patients are often under good care by other specialists, home care and/or family. We try to assess that no one closely involved in the care of that individual has serious objection, at least not without an opportunity to come to a resolution and find peace, although that is not something we can guarantee.”
Rather nervously I asked about the pharmaceutical protocol used – possibly because of the silly association in my mind with botched criminal executions in the US, which have no relationship to MAID.
“The nurse with me (who may also be the MAID care team coordinator) starts the IV,” said Jackson. “The IV protocol calls for midazolam for sedation, lidocaine to prep the vein because propofol is irritating, then propofol for anesthesia induction, and finally rocuronium for paralysis, with normal saline flushes in between agents. Breathing invariably stops within about five minutes, the heart within about 10. No one in Alberta has gone through with the alternative oral protocol, yet.”
So far there have been no mishaps, though occasionally the wait time for patients has been longer than ideal, for example if there is a difficulty getting a provider or the prescription filled promptly. It’s critical to rule out poor symptom management, especially pain control. A patient of mine with chronic metastatic bone disease had a recurrence of severe pain three years ago. The pain did not respond to simple oral morphine, and she requested MAID. I arranged a review with the palliative care team who got on top of her pain quickly and efficiently and she is still alive, mobile and (I think) fairly happy today.
“How do you dress,” I asked (probably stupidly). But I wanted to get a picture in my mind’s eye.
“Well, certainly no white coat,” he said, smiling. “I also gave up on wearing a blazer or sports jacket when I do consults. Patients are smart and will try to tell you what they think you want to hear if you look like a generic consultant. Shirt and cardigan combo is the routine. Also I try to lose the pager, or have it on silent mode. Any distraction is disturbing for all. If the patient has religious affiliations, their minister might attend,” Jackson added. “On those occasions, their presence brings a palpable sense of wholeness and peace to the event.”
Jackson offered additional thoughts on consent: “We’re likely not ready for advanced directives from patients currently lacking capacity since consent must be current and is always requested again at the time of the procedure. The non-durability of the consent is, if nothing else, a logistical constraint. From a practical point of view, without invoking complicated issues around advance directives, it would certainly ease a lot of patient and family anxiety if consent can be durable for say 48 or 72 hours. That way patients won’t have to worry about taking adequate opioids or sedatives for symptom control that might inadvertently compromise alertness on provision day.”
“How do you relax, Jackson? How do you avoid getting overwhelmed by this?” I asked, recalling my Edmonton dentist who asked me the same kind of question: “Don’t you find working at the Cross depressing?” His question came as my mouth was gagged with a rubber dam. Later I cruelly told him I’d be a hell of a lot more depressed doing nothing but filling teeth day after day.
Jackson listens to music, usually classical (think requiem), through stereophile-grade equipment, to help him clear out the cache of entangled clinical and emotional experience, without the need to block out difficult sad scenes. “I could live in a concert hall, I think. But my wife brings home many happy stories from her obstetrical practice … Our experience at the two extremes of life kind of balances out,” he explains.
In Alberta, MAID occurs roughly equally among hospital, hospice and home. Usually members of the family are present, but if there are no living relatives, the family doctor or the health care service coordinator may be the closest, and their presence is as good as that of a family.
MAID is still a work-in-progress. Outstanding issues include a role for advanced directives, MAID in under 18 age group, and the definition of “foreseeable death.” Allowing mental illness as a qualifier is going to be particularly difficult. The Stoics also would have had difficulty with that.
Commentaries provided reflect personal communications. Readers should refer to CPSA and AHS MAID websites for standardized information and materials.
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