What do caregivers need from the health care system? This was the question I was asked at a recent online Town Hall event sponsored by The Caring Experience, a new project designed to collect the stories of Ontario family caregivers and develop policy options that will reflect what families want and need from the health care system.
I believe that caregivers need the health care system to be responsive. But what does that actually mean? In our dealings with doctors, nurses in hospitals, outpatient clinics or in home care, we need doctors to know us and to understand us.
"If you wish to persuade me, you must think my thoughts, feel my feelings and speak my words." Cicero
Medical professionals want to understand what ails our loved one and they want family caregivers to carry out prescribed care plans. But because the way we feel about our loved one's illness and dependency is so emotionally bound up in our personal histories, it is very difficult for medical professionals to understand what is really going on. But they must. We need people working within the health care system to take the time to understand the patient AND the family. This means knowing what caregiving at home really looks like and what it feels like to the individual caregiver.
We need medical professionals to listen well and be kind. My son Nicholas has endured multiple surgeries and chronic pain. I remember saying to the doctors "I want to tell you something important about what I need as Nick's mother. I need you to be nice to me." I don't recall any doctor understanding the importance of my request. In order to be a good caregiver, I need exceptional kindness shown to me. At a time of crisis, I cannot cope with the normal brief and sometimes brusque conversation style typical of hospital bedside chats. I need medical professionals to drop the veneer of professionalism, call me by my name, look at me and even hold my hand. In short, I need a human interaction with my loved one's medical professionals, especially at times of crisis and especially when caring lasts months or years.
We need medical professionals to work with us as consultants would. My friend and colleague Vickie Cammack has a beautiful analogy about patients and family caregivers in working together in a circle of care. Vickie says, "When I invite an interior decorator into my home, she asks me about my colour preferences, my favourite pieces of furniture, how we use our rooms and what changes we'd like to make. Then, she presents me with some options and costs. Then I choose and we agree on a plan. That's how I would like the medical professionals in my life to work with me." The analogy of the decorator is an excellent one. Caregivers need their clinicians to understand the medical and social realities of living with illness and they need options for treatment. Caregivers need support before, during and after taking treatment decisions with or for their loved ones.
We need medical professionals to be accessible. Caregivers nod their heads in collective understanding when one of their own sighs, "My son has epilepsy and yesterday he had a strange new kind of seizure that worried me. Our next neurology appointment is four months away. I'm not sure what to do or who to tell." So often caregivers at home with very sick or disabled loved ones have only two options: call 911 or do nothing. For any frail or complex patient, the emergency room is a risky place to be. But new symptoms that occur can be difficult for caregivers to read - they could be life-threatening or completely benign. Caregivers need help navigating the system and a health care professional with access to the patient's record should be accessible to give advice.
We need the medical system to serve the needs of families, not just the systemic need for accountability and resource management. And caregivers want to work in partnership with professionals who have the knowledge and expertise to advise us and support us in caring for the people we love.