Despite my best efforts sometimes people just aren’t interested in what I have to sell. I am trying to work in the best interests of the patient. I want to make them as comfortable as possible. If there is pain I want to alleviate it as much as possible. If there is breathlessness I want to do something about it. Untreated distress in a patient will lead to distress in their family members. Similar to the care philosophy in Paediatrics, in Palliative Care practice you need to consider the patient, and their loved ones as the unit of care.
The duty of care is to the patient above all but consideration for their loved ones is essential. They will be the ones who will survive this episode of care. Reduction of their distress needs to be considered secondary to reduction of patient distress. Most of the time we will all be on the same page. The patient wants their distressing symptom relieved, as do their loved ones, as do the clinicians. Everyone is in agreement and things are relatively simple.
This is not always the case though. At times I identify suffering in a patient and I will recommend a course of treatment. All treatments will have side effects, with a lot of the medications we use sleepiness is a common side effect. The patient may not want to feel sleepy and will try to put up with the distressing symptom themselves. Or their family will want them to be as alert as possible, which may come at the cost of comfort.
My usual practice is to keep the lines of communication open, to negotiate the management plan. Us clinicians will only be involved in the case briefly and we want to do the best job possible, to make our patient as comfortable as possible. At times this may be at odds with what the patient and their family may want. They have to be able to live with the decisions they make during these crucial times.
Sometimes we have to agree to disagree but it is important to leave open the lines of communication. I will try my best to be guided by what the patient wants even if what they choose goes against our advice. It is their life after all and not mine that is on the line. I try to keep an open mind, but at times this may be difficult. Especially when I am sure my treatment plan would make the patient more comfortable but they and their loved ones are not interested. They want to do things their way, to exert some control over their situation.
“Get out of the way son.”
I leave the door open to further communication. They are allowed to change their mind at any time. They will not be treated differently because of what they have chosen. It may be tough for us clinicians to handle, but it is nothing compared to what the patient and their loved ones are going through. Suck it up and stay supportive. It’s the patient’s right to choose or reject whatever treatments they want or don’t want. It’s their life, not ours. They and their loved ones have to do the right thing for themselves.