Abstract
Dear ER Doctor: my mother is ill and I'm worried. She has been unwell for a long time but is becoming progressively worse. Her chronic advanced illness and multimorbidities have robbed her of doing many things she enjoyed and, in general, we feel her overall status is deteriorating physically and mentally, for example, she is more forgetful, it is dangerous for her to continue to drive. You've ordered multiple screening tests to determine several biological parameters to try to understand what's making my mother confused. You have also come out and ask me questions to help you understand how long certain issues have been ongoing and how I feel how she has been doing. I've known my mother for decades, you've known her for a few minutes, so it makes perfect sense to me that you are asking all these questions. It's reassuring. Thank you.
We also want to know what's causing my mother being unwell and when you find out we really want you to fix it. Forever. Well, forever is the fantasy, as long as possible, the new reality we are hoping for.
You are about to go back inside and I ask you one more question: “don't you think my mother might benefit from a palliative care consult?” you look straight into my eyes and frown your eyebrows replying “Oh not at all! We are certainly not there yet!” My thoughts: “Not there yet? Not there, where? At the terminal stage of her advanced heart failure? And 30 years of diabetes? And a few years of respiratory disease? Being hypocoagulated for 16 years ever since two synthetic heart valves were placed? And if you don't have the results back, what makes you so certain to give that answer? What makes you so secure to dismiss referring her to this service?” I don't know because you ran inside, and I never saw you again. I suspect you may not know exactly what palliative care is. I'm scared you might have confused it with terminal care. 1
Results have come back, and you and a couple more colleagues have made the decision that my mother has criteria to be admitted to hospital. She is unwell. There is no definite diagnosis, but besides being confused and having low O2 saturation levels, she is also developing a fever. Immediate treatment and further testing are prescribed. As for me, I must call home and let my family know the difficult news.
Once my mother is settled, I am allowed in to be with her for a bit. An internal medicine doctor is now assigned to my mother's case. She comes and talks to me explaining there will be exploratory testing to try to diagnose the problem and rule out certain diseases. After a 10-minute conversation, in which I express my worries, I ask the same question about palliative care referral. The answer sounds deceivingly reassuring, as I stare at a pair of frown eyebrows, and hear “What?! No, we're not there yet! I believe this is going to be a very short stay at the hospital. We'll sort things out.” As I am thinking to myself “Humm… sort what exactly? None of my mother's conditions have a cure. So, do you mean manage, maybe” 2 but you are very busy and run away. Twelve days later she is discharged, stays at home for seven days, and is admitted again with a stroke.
The next hospital admission will be much longer, over one month. We are very scared. Thanks to an excellent young male nurse in the stroke unit who heard me, heard my concerns, and understood my anguish, later that day, I was able to then talk to one of my mother's doctors and ask for palliative care. I cried the whole time during the 15-minute talk with the nurse and during the 15-minute talk with the doctor. I've never had my mother this ill and I've never had to talk about her wishes to medical staff by expressing them out loud. I know you see elderly people in worse conditions every day, but I don't. Having to ask about resuscitation criteria isn't something I ever thought I would hear myself say. Never had I heard that combination of words coming out of my mouth. I felt desolation and fear. But you said “no, your mother does not have resuscitation criteria, so if an event occurs and her heart stops, we will not try to revive her.”
I don't really have words to describe the relief I felt, although part of me was horrified, as now there was a real concrete possibility that my mother could die soon. I sobbed “I'm so relieved that you are saying this to me because I can see her deteriorating every day and she did not want to be bed bound, dependent… it's good to know this.” And we shared a moment of silence. Your face seemed to reveal that you were relieved too. I became calmer. There is power in knowing that no drastic measures would be taken, no breaking ribs while pounding on her chest, no life support with a dozen tubes and needles. Her wishes, her autonomy will be respected. I asked whether this was written in her chart. It was. Being given this information made me feel much more confident in all the health care professionals.
So that's when I asked again “will you be referring my mother to palliative care? Regardless of the outcome? Whether she recovers a bit, a lot, or not at all? Because in my head it makes sense to have them involved now and not later.” This was a Friday afternoon. You replied, “if your mother doesn't respond by Monday morning, we will call palliative care.” Finally. In total it took asking six doctors, two nurses, two ER visits, two hospital stays, two hospital services, and 23 days, for my mother to be assessed by a doctor with palliative care training, and even longer, to have a family conference with two doctors and a social worker.
Dear ER Doctor and colleagues with no palliative care training: when a family member asks about “collaboration with the palliative care team,” please stop and consider asking them about the reasons of such a serious question. Listen, maybe say you are assessing all possibilities and once you have all the results you will come back to discuss things further. This will give you time to read/ask/liase and discuss with the palliative care team about referral criteria. Then, come back to talk to the relative and either say you will not call palliative care just now because you have discussed with them and it may be too early, but, a note will be made about the request. If the situation further deteriorates, collaboration with the palliative care team is a strong possibility. Or maybe say you've spoken with the palliative care team and they will assess the patient. Further decisions will be taken from there.
It takes courage to ask for palliative care from the relative's perspective because it is admitting that things are getting worse—and even if things are not getting worse, it could still be important to involve the palliative care team—that a reality in which their loved one will no longer be a part of is fast approaching. But maybe it also takes courage for a medical specialist to call for palliative care collaboration because it means it is the realization of not being able to cure the patient or making them much better than when they first got to the ER.
Dear Doctor, please notice the word “collaboration,” in which a group of health care professionals comes together to try and present the best options—which serve the best interest of the patient and their family—to make the most appropriate decisions with the patient and their family. Should the patient recover, the palliative care team will discharge them until they are needed again, like any other specialty. Does this scenario not bring you some sort of comfort? Dear Doctor, I know who you are. You are a human being, you are a lot of my friends, you are a lot of health care professionals with whom I've collaborated in the past, you are permanently in training, you will never know everything, you are overstretched, you occasionally make mistakes and you sometimes feel helpless. Dear Doctor, when I look at you I don't see authority, I see someone with extreme life and death responsibilities.
Please give your local palliative care team enough time to collaborate on different care plans depending on how your patient responds, liase earlier than what you normally would so that all resources and expertise are used to their full capacity. You may have better outcomes calling them sooner rather than 48 hours before death. You will also be giving the patient and their family time to process things and time to make decisions.
Fifty-six days from first ER visit till discharge to a rehabilitation unit. Ninety days from first ER visit till she died. No health care professional recognized she was in the last three months of her life. None. This will sit with us for the rest of our lives.
If we could measure the amount of harm caused by poor communication and lacking in palliative care training, what would we find?