I’ve said a lot about why I think institutional ‘patient-centred care’ isn’t all it pretends to be. You can read a thorough post here and a shorter post here. Word count notwithstanding, it’s taken me a long time, and years of direct experience as a patient-parent, to articulate some of these problems. Yet, I’m not sure I’ve truly gotten to the heart of the matter. I’m working on an idea: maybe the problem isn’t that institutions and health care providers aren’t doing it right. Maybe the problem is that being ‘patient-centred’ is simply the wrong thing to strive for. Or that it’s not actually what patients need.
Let’s try to imagine what the term ‘patient-centred’ actually looks like. It’s a pretty specific image, yes? I picture a circle with all the care providers standing around the edges. The patient and family are in the middle. All of the care providers – the professionals – are gathered, murmuring to each other, clipboard in hand, gazing on the patient-as-object and trying to figure out what will make them satisfied/happy/compliant. In this imagined scene, maybe the patient is asked for their input. Maybe there are conversations where the patient is afforded patience, time, sensitivity. Maybe the professionals ‘acknowledge their culture’ (whatever that’s supposed to mean) by respecting certain customs. Maybe there is psycho-social support, peer support, pastoral care.
To what end are all of these efforts deployed? I have my theories, as amply noted throughout this blog: to soothe unhappy ‘customers’; to give a smooth veneer to the messy business of herding multitudes of people through a narrow funnel; to obfuscate processes that patients would surely complain about; to give patients a feeling of empowerment when really they possess no discernible powers; to diffuse (and confuse) situations where patients are difficult or non-compliant; to ease moral distress for health care providers; the list goes on.
Surely these things are necessary, it could be argued, to keep things running. I don’t have broad complaints about any enterprise doing what it can to deliver its services in the most efficient and effective way possible. But as the targets of these efforts, let’s not kid ourselves. The term ‘patient-centred’ has become so commonplace, and therefore so meaningless, it’s the health care equivalent of ‘new and improved taste!’ In other words, better mouth feel so it all goes down better. It’s embraced so whole-heartedly by the institution that there can be no doubt: the primary beneficiaries of patient-centred care initiatives are the institutions themselves.
A key question remains: is this what patients need? I suppose to some extent it’s what some patients want. It’s nice to feel important and heard. Some of these efforts likely improved my encounters with health care providers or made them more pleasant. We are a nation of consumers, and we like to be told that the customer is always right. But just like retail customers, we should be under no delusion that we are actually in charge of anything.
I’ve recently learned about three different approaches (in different healthcare disciplines) that embody alternatives to the hollowness described above. Interestingly, these approaches indeed claim to be patient-centred, although I wonder if they are aligning with the wrong term (despite its legitimizing effect). I think they go way beyond what’s become of patient-centred care.
In two of the approaches, patients’ expressly articulated priorities and goals are the central themes around which care or treatment is organized. I’m loath to use the word ‘partnership’ because of its overuse, but in each case its use is appropriate – the health care team indeed works in partnership with the patient. In all of the approaches, they recognize the patient as expert-partner in their own care, and invite or even require patient participation in problem-solving. In these approaches, I don’t get a sense of the patient in the middle – I instead see the patient joining forces with their health care providers as an equal and valued contributor. The patient is readily invited to become part of the team, the staff is trained to support their participation, and all rally together to find solutions or best ways forward.
The details of these approaches may or may not be relevant to individual readers. However, after all my criticisms of patient-centred care, I want to share encouraging examples of what happens when health care providers reorient themselves to the patient’s priorities.
(Full disclosure: I know about these because the pioneering researchers who developed (or helped develop) these approaches are or have been clients, and one is a book project collaborator. My account of these approaches is based only on information that is publicly available.)
1. Cognitive Orientation to daily Occupational Performance (CO-OP)
This is an occupational therapy approach which supports clients in reaching their own specific goals. (Occupational therapy focuses on helping people perform tasks required for daily living and/or work.) Developed initially for adults with cerebral palsy and developmental delay, the approach is being studied and used with children with the same conditions, and with adults post-stroke. Other populations are also being studied.
(Note: I’ve switched to the word ‘client’ in this context – people receiving OT services are not necessarily ‘patients’ in the traditional sense, as they may not be receiving medical care. It’s also the standard vocabulary for this discipline.)
Here’s the overall gist of CO-OP:
- The client states a specific goal – tying shoes, riding a bike, improving hand-writing – and is observed and measured on their performance. The therapist measures the client’s baseline ability and tracks performance over time, relative to the baseline and desired outcome.
- Through dialogue, the client is led or coached by the therapist to discover for her or himself what needs to be changed in order to get closer to the goal. The client does not practice other therapeutic activities (e.g. balancing on a ball in order to improve stability for bike-riding) but rather practices the thing they want to be able to do. Improving bike-riding means doing more bike-riding.
- The therapist helps ensure the client is not practicing the wrong thing over and over – instead, the therapist supports the client to self-assess what is going wrong, and helps the client break down adjustments into small, manageable steps. The mantra of CO-OP is Goal-Plan-Do-Check – Make a Goal, then Plan-Do-Check over and over, until the task is accomplished to the desired level of skill. If the Do is unsuccessful, make a new Plan.
What does this approach get right?
- First, this intervention is completely client-led. There are no developmental or functional expectations about what ought to come first. The client picks the goal – which is often quite reasonable – and is therefore motivated to achieve it.
- This approach does not require an ‘expert’ to determine success in meeting a goal, or even in determining the merits of a goal. The client knows what she or he wants to achieve, and knows when the goal has been accomplished. Success or failure is observable – you either walked up the stairs or you didn’t.
- A key component of the approach (to me) is that it is completely transparent to the client. The therapist reveals the secrets at the beginning. There is even a PowerPoint presentation for the client to explain how the approach works and the principles behind it. Children are taught the technique with clarity and directness. Therapists are instructed to be specific, to be obvious. Goal-Plan-Do-Check.
As the name indicates, CO-OP requires that the client have cognitive and communication ability. The client must be able to set goals, communicate verbally with the therapist, and possess a high degree of cognitive processing. And of course, the client must be physically capable of completing the task (with or without aids or devices). This would not likely have been a suitable therapy for Owen. But I especially appreciate this approach because in all of our years of physio and occupational therapy, therapists rarely explained anything to me, asked me about my priorities for Owen or engaged me in setting goals. For many years, I had no idea there were different ‘approaches’, or that one approach was being selected over another. CO-OP, instead, openly declares itself – something most interventions fail to do.
2. CanChild’s F-Words, mICF and more
A patient’s personal, family and social context matters a great deal – not only with regards to how they are coping emotionally, but also the degree to which they experience their health condition as limiting. (For many people with ‘disability’ diagnoses, the condition is not a personal problem at all, but rather they may face (for example) discrimination, isolation, and poor accessibility.) Yet many parents of children with chronic conditions still find their child is seen by health professionals only in terms of their disease or disability, which can interfere with pursuing a robust family and social life for the child.
To address this, some clinicians and researchers are looking to a framework developed by the World Health Organization, and applying it to the field of developmental medicine. The framework itself, the ICF (International Classification of Functioning, Disability and Health) is a classification tool for measuring health and disability which considers the physical and social environment in which a person lives when assessing levels of health and disability for both individuals and populations. (Notice the suspect word ‘cultural’ is not included.) The classification part of this framework is not necessarily the focus for these initiatives – what’s interesting to researchers, rather, is the notion of a person’s context, and their functioning within that context.
I understand there are many teams of researchers around the world looking to adopt/adapt the ICF to various fields of medicine – I’m familiar with two:
- F-Words in Childhood Disability, developed at CanChild, McMaster University. Their adoption of the ICF is more of a translation – overlaying the more technical terms with family-friendly accessible language (Fitness, Function, Friends, Family. Fun). The playful approach slightly downplays the deep research and thinking behind this approach, but maybe the lighter language helps to clarify the concepts for lay people.
- mICF, a mobile application (in development) to provide people with health conditions and their families with a means of recording their priorities, goals and experiences related to living with their conditions, and sharing these with their team of health care providers, in order to rally the team around the patient’s health care goals. Mapping this input to the ICF generally, researchers will be able to access the dataset to better understand the lived experiences of people with health conditions around the world. This application is being developed by a consortium of international researchers and clinicians. (A good high level overview was presented at MedicineX 2016 at Stanford by Dr. Olaf Kraus de Camargo, transcript here.)
What do these approaches get right?
- These efforts seem to crystallize around a central idea: the effects of a person’s health condition cannot be fully understood without considering it in the context of a host of other factors. By taking a panoramic view, barriers to full participation in life’s activities can be more readily identified and addressed.
- A person’s priorities and goals are the themes around which the team coalesce, not the person’s diagnosis or so-called impairment. Again, this allows for barriers to be identified more clearly and minimizes or removes the assumption that non-normative development is the root problem.
- In the case of mICF, a person’s own account of their life and health condition is integrated as an important part of the health record that is shared with the health care team.
3. Family Integrated Care
My son was in the Neonatal Intensive Care Unit (NICU) at Mount Sinai Hospital in Toronto, over 18 years ago now. For those harrowing 3 months, I felt like an outsider. So much technology, so much expertise. I would insert myself wherever I could but I mostly felt like I was in the way. Or, I felt as though the staff were doing me a favour when I was allowed to assist with my son’s care.
In recent years, Dr. Shoo Lee (at Mount Sinai Hospital) and his team have been researching the effects of integrating parents into infant care in the NICU. Preliminary results are significant enough in terms of improved health outcomes for the babies and improved care at home by the parents, the research team has launched Family Integrated Care (FiCare) as an outreach initiative to support other hospitals who wish to adopt the methodology.
Among other activities that comprise the FiCare model of care, parents are trained and mentored to provide bedside care to their infants while in the hospital – in doing so, they get to know their child very well. They record these activities in the patient chart and they give report on rounds. (I remember way back when, all parents were asked to leave the bedside, out of earshot, while the staff made their rounds and discussed our babies.)
What does this model get right?
- Parents are invited (and trained) to provide the care they would ordinarily provide to their child if they were at home.
- Staff are extensively trained to support and train parents in this new role. (It should not be underestimated how much this represents a workplace cultural shift for staff – bedside nurses in particular.)
- As parents increasingly participate in the care of their child, their familiarity with their child is understood to provide an important continuity during rounds and at change of shift of staff. Their reports are valued as an integral part of tracking progress of the child.
- The teaching and mentoring the parents receive at the hospital better prepares them for caring for their child at home. Their confidence is higher than it would have been without this in-hospital experience, and they are skilled at observing their child’s health status, tracking changes and advocating for care.
To find out more about Family Integrated Care, visit their website.
A patient’s reporting of symptoms or telling of their story to a physician, however compassionate that physician may be, is not the same thing as the patient’s full and valued participation in not only identifying and framing their own health issues, but also problem-solving and goal-setting.
Certainly these models and approaches are not perfect – they are works in progress and continue to evolve. But still, they are encouraging examples of health care initiatives that elicit, record and value patients’ expertise, experience and perspective.