Why is patient-centred care (PCC) not embraced by physicians who clearly want the best for their patients? PCC is desired by patients, takes no more time to provide, and can result in better outcomes. We believe that physicians are hesitant to adopt PCC because it has been imposed from “outside.” Growing evidence suggests that engaging patients can improve outcomes — for the patient, the family, and the clinician.
KEY WORDS: patient-centred care, patient outcomes, clinical practice
If one takes a quick tour through websites of hospitals and health regions across the country, it quickly becomes evident that “enhancing the patient experience,” “person- or relationship-centred care,” and “patient- and family-centred care” have become common priorities. Many, if not most, organizations are working toward including the voice of patients in decision-making and stressing the importance of patients partnering in their own care. Some organizations, such as Toronto’s Holland Bloorview Kids Rehabilitation Hospital take this direction much further by building the patient voice into all decisions that govern how children are cared for.1 From a patient perspective, the patient-centred care (PCC) movement is long overdue, clearly positive, and an important step forward for patients and their families.
Yet, we also know that PCC is not always greeted with the same positivity by medical staff. At first glance, this is surprising given that, in our experience, the vast majority of our doctors enter medicine wanting passionately to help people. So, focusing on the needs of the patient would logically be at the very core of their practice. We know of many colleagues who push themselves to the limit (and often beyond) trying to provide excellent care, putting in long hours, working on evenings and weekends. One would think that centring care around the needs of the patient could only help patients in dealing with their illnesses.
Why the hesitation for many doctors to “buy-in” to the PCC movement? In our experience, this is too often explained away by physician self-interest or paternalism. Although some of this likely exists, we believe there are many reasons why PCC has not always resonated with doctors. Some involve concerns regarding improvement in outcomes that are slowly being addressed in the medical literature, others involve human factors, such as issues around the increasing use of technology, while still others have to do with how doctors were engaged in the PCC movement in the first place. Confusion remains around what PCC means and how it can be incorporated into one’s practice.
PCC was defined by the Institute of Medicine almost two decades ago as “providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.”2 Don Berwick, of the Institute for Healthcare Improvement, has argued that “Patient-centeredness is a dimension of health care quality in its own right, not just because of its connection with other desired aims, like safety and effectiveness. Its proper incorporation into new health care designs will involve some radical, unfamiliar, and disruptive shifts in control and power, out of the hands of those who give care and into the hands of those who receive it.”3
These visions do not include supplanting the expertise of the clinician; they do not mean that Dr. Google will reign supreme. It is a misconception that PCC means that doctors must offer care that they disagree with because a patient requests it. What PCC does mean, however, is that the physician treats patients in a respectful manner, treats them like a partner in their care, and, if necessary, explains why they are unable to comply with the patient’s wishes.
In our experience, although such clinical disagreements occur, it is misleading to focus on them, as the vast majority of unsatisfactory patient–physician interactions have to do with basic, everyday civility and respect. Patients look for a human connection, which is more than just knowledge and technical expertise. They want to be seen as real individuals, not just a disease or a puzzle to solve. They seek supportive partners who are not too impatient or brusque to welcome questions. And they know that the small things matter, that every interaction counts.
One of us (Judith) offers countless examples of just how a person inhabiting the blue hospital gown becomes invisible and how alienating that can be. She was called in for an MRI from a crowded waiting room with the words “brain tumour” rather than her name. A doctor discussed her case with fellows in the doorway of her room — too busy to enter or make contact — without even acknowledging her presence. A clinical group reviewed her prognosis without explaining what the procedure would be, shutting her down when she had the temerity to ask questions.
Judith has also experienced the negative impact of technology on her patient experience, similar to that so poignantly illustrated in JAMA by a child’s drawing of a physician hunched over a computer screen during her visit.4 Technology, while a huge asset to sophisticated, advanced care, can be a barrier to humane connection: a wall of separation instead of a bridge to a care partnership. Once, when Judith was visiting a clinician, it was clear that he was fully absorbed in the MRI images on his computer screen; he never glanced in her direction. She could have been an empty chair next to his desk. Finally, in frustration tinged with dry humour, she asked him if he had no interest in taking a look at the “packaging — me, the patient!” Top
Does practising PCC take more time? We argue that, on the contrary, it can speed up working with patients as the level of understanding and dialogue takes a lot of misunderstanding out of the picture. Although it would be difficult to measure, we believe an engaged partnership, based on mutual trust and real communication, means better compliance, more effective visits, less follow up, and a positive impact on outcomes. Other physicians we have spoken with, who have embraced partnering with patients, have had similar experiences. While building a relationship on understanding and dialogue will likely take more time in the beginning, it is time well invested.
There is some evidence that practising PCC can improve patient outcomes. Perhaps not surprisingly, the complexity and variability of PCC interventions have made it difficult to show clear evidence of improvement. In a systematic review of PCC and patient outcomes, Rathert et al.5 found evidence to suggest that practising PCC improves patient self-management and satisfaction. Some of the reviewed studies also showed improvements in patient outcomes; however, many were challenged by lack of clarity regarding the intervention, dilution of the control group by the intervention, and other methodological issues. Similar biases and mixed findings have been reported by Dwamena et al.6 in their Cochrane review, suggesting that although PCC may hold promise, more work is needed before it can be clearly associated with improved patient outcomes. Of interest, one study reviewed by Rathert et al.5 showed an improvement in diabetes care with the implementation of a PCC program focusing on self-care and management; yet, the intervention was not continued after the study ended because of lack of physician participation.7
Physician disinterest brings us to our final point: we think that one of the major reasons PCC has not resonated with physicians is because they have been asked to “buy-in” to a program that was largely, if not wholly, created by others. As defined by Mark Jaben,8 buy-in means that others have identified a problem, envisioned what a solution looks like, worked on strategies and discussed options for implementation, and then brought a finished or near-finished product to the target group and asked them to adopt it as their own. As business professor, David Logan, has said: “Asking for someone’s ‘buy-in’ says, ‘I have an idea. I didn’t involve you because I didn’t value you enough to discuss it with you. I want you to embrace it as if you were in on it from the beginning.’”9
Although some physicians have been at the forefront of PCC, most of the work has been championed by others and brought to physicians as a fait accompli instead of inviting them to co-create what PCC looks like in their practice. Because true PCC is founded on the principles of a real partnership, developing and then mandating the program unilaterally is doomed to scepticism and failure.
PCC is often thought of as a step-wise progression from informing patients, to consultation and involving them in their care, to collaboration, and finally to empowerment.10 Although almost all patient encounters will result in patients being informed, we suspect that many encounters that occur in our health care institutions have not progressed much along the road toward true empowerment. Beyond clinical encounters, the patient voice also needs to be heard and incorporated into how we deliver health care. Organizations must move beyond vision statements and intentionally build structures and processes that incorporate the patient voice into everyday operations in addition to physician–patient encounters. For examples, look to Kingston General Hospital11 and Holland Bloorview.1 This is the direction set by Accreditation Canada, which is now expecting health care organizations to engage patients in a meaningful way.12
Understanding the parameters, principles, and practice of PCC from the vantage point of both the patient and the practitioner — and how it is necessary and mutually beneficial — is the basis of a course we have co-created for Joule. Through storytelling, idea exchange, anecdotes, and situational experiences, we illuminate the challenges and the opportunities a true patient-centred, partnership approach can foster. Top
We believe, and growing evidence suggests, that engaging patients can improve outcomes — for the patient, the family, and the clinician. It can help alleviate physician ennui, something one of us (Michael) experienced as he began working toward a more patient-centred approach. It can help with job satisfaction in a highly stressful, pressured environment. It can take doctors back to their initial idealism and sense of purpose. And it can be done easily, daily, patient by patient, without extra time, expense, or angst — and with results. It all goes back to the words of William Osler: “The good physician treats the disease; the great physician treats the patient who has the disease.”13
1.No boundaries: Holland Bloorview Kids Rehabilitation Hospital strategic plan 2017–2022. Toronto: Holland Bloorview Kids Rehabilitation Hospital; 2017. Available: https://tinyurl.com/y9pjm9pa (accessed 1 Nov. 2017).
2.Institute of Medicine, Committee on Quality of Health Care in America. Crossing the quality chasm: a new health system for the twenty-first century. Washington: National Academies Press; 2001. Available: https://tinyurl.com/yc6mgs6t
3.Berwick D. What ‘patient-centered’ should mean: confessions of an extremist. Health Aff 2009;28(4):w555-65. Available: https://tinyurl.com/y7m8rphd (accessed 13 Nov. 2017).
4.Toll E. A piece of my mind: the cost of technology. JAMA 2012;307(23):2497-8.
5.Rathert C, Wyrwich MD, Boren SA. Patient-centered care and outcomes: a systematic review of the literature. Med Care Res Rev 2012;70(4):351-79.
6.Dwamena F, Holmes-Rovner M, Gaulden CM, Jorgenson S, Sadigh G, Sikorskii A, et al. Interventions for providers to promote a patient-centred approach in clinical consultations. Cochrane Database Syst Rev 2012;12:CD003267. Dec 12. Available: https://tinyurl.com/y788djez (accessed 16 Oct. 2017). doi: 10.1002/14651858.CD003267.pub2.
7.Glasgow RE, Nutting PA, King DK, Nelson CC, Cutter G, Gaglio B, et al. A practical randomized trial to improve diabetes care. J Gen Intern Med 2004;19(12):1167-74.
8.Jaben M. Quality café. The science behind resistance (slide presentation). Vancouver: BC Patient Safety and Quality Council; 2016. Available: https://tinyurl.com/y83khwat (accessed 13 Nov. 2017).
9.Mallet M, Nelson B, Steiner C. The most annoying, pretentious and useless business jargon. Forbes 2012;Jan 26. Available: https://tinyurl.com/y9jehk53 (accessed 13 Nov. 2017).
10.Baker GR, Judd M, Fancott C, Maika, C. Creating “engagement-capable environments” in healthcare. In: Patient engagement: catalyzing improvement and innovation in healthcare. Toronto: Longwoods Publishing; 2016.
11.Judd M, Rivoire E, Maika C. Kingston General Hospital. In: Patient engagement: catalyzing improvement and innovation in healthcare. Toronto: Longwoods Publishing; 2016.
12.Thompson LJ, Clement L. People powered health: taking front-line ownership to the next level. Healthc Pap 2017;17(1):29-33.
13.William Osler quotes. BrainyQuote.com; n.d. Available: https://tinyurl.com/y7ojhwb9 (accessed 14 Nov. 2017).
Michael Gardam, MSc, MD, CM, FRCPC, is an associate professor of medicine at the University of Toronto and chief of staff at Humber River Hospital.
Judith John, BA, is a patient advocate with the University Health Network, Toronto.
This article has been peer reviewed Top