The Particular Amongst the Universal

My wife is one of those very unfortunate people who have had a long and intimate association with Ontario’s roster of medical practitioners and health service providers. She has had a number of serious chronic illnesses and physical afflictions that have brought her into close acquaintance with virtually every layer and every type of medical professional within Ontario’s health care system. In addition to the full range of childhood illnesses, she suffered from nefritis, frequent UTI’s and congenital aortic stenosis. She had the normal childhood surgeries – tonsillectomy and appendix removal. Her roster of adult surgeries, procedures and diseases include an open heart double valve transplant, colon cancer with ileostomy, shoulder and hip replacements, cauda equina with loss of bowel and bladder function, type II diabetes, three near fatal instances of sepsis and over 20 hours of back surgery (fusions) in a 15-month period, the direct result of medical incompetence in two local hospitals and by several diagnosticians and specialists.

Over the last five years she has spent almost as much time in hospital as she has at home and her care needs have progressively increased as both her mobility and her capacities have diminished. She has seen the best that Ontario medicine can offer – the benefit of two world renowned surgeons, cardiac and orthopaedic – and the worst, the rank incompetence of our local hospital’s Emergency Department coupled with a smorgasbord of institutional and professional indifference that have left her forever disabled. She is the most courageous person whom I have ever met and one of the most naturally positive, despite all the setbacks that life has given her.

As of the beginning of August, she is in long term care and has a chance, I believe, to live out the remainder of her life in some degree of comfort, dignity and relative happiness. But the process of getting to this point has been difficult and frustrating beyond belief. The last ten years, when she needed appropriate care and attention most desperately, have ironically been the most disheartening and dispiriting of all. Her “journey” (for those romantics who portray life’s conflicts as some type of heroic quest) has been brutal and dehumanizing.

The “final mile”, the application and placement in long-term care, was neither simple nor compassionate. There was no consideration of nor allowance for any emotional dimension; how difficult a decision it could be, how much guilt and uncertainty was naturally involved.

In the end, it was just a numbers game and, while it exposed the hardened disfunction of our health care system, it was admittedly executed with the efficiency of a forensic accountant.

Why am I writing this now? It is my belief, from a long and intense engagement with Ontario’s universal health care model, that it is seriously broken. For those who would see this as an opportunity to credit/discredit one set of political beliefs over another, let me assure you that the state of health care in the province today is not the problem or product of one government or one set of politicians. It is the result of years of ineffective, complacent and incompetent bureaucracy; of vested interests, institutional self-regulation and a largely ignorant and unaware (thus compliant) public. The damage is perhaps beyond the ability now for repair. Certainly what is needed is widespread, fundamental and totally apolitical change.

That said, the impetus for this piece did, in fact, come from a political source. I had attempted with no success to engage the assistance of our local MPP, Natalie Pierre, in securing a long term care bed for my wife. The conversation was tense and terse. In response to Ms. Pierre’s verbal “challenge”, I provided her office with my “ideas” for systemic health care improvement and offered to meet at her convenience. I did so in good faith – providing “observations” and recommendations that could serve as the first of many ‘touchstones’ for further consideration and debate. I received a polite, scripted response that offered no further opportunity for meeting or exchange of views. The conversation was over before it had even begun.

The following are my "personal" observations on our health care system and its service and support structures. Each “observation” can and should be preceded by the phrase “in my opinion” – although each is carefully considered and can be substantiated by both evidence and experience.

• There are many critical flaws in the current provincial policy formulation, funding and operational health care models; the most destructive, I believe, is that the system is hospital- rather than patient-centric. It tends to focus on the institutions and their infrastructure with deliverables and outcomes that are skewed to and reward the status quo or, at best, posit an uneasy truce with necessary change. The overall vision of provincial health care has not materially evolved in over 40 years.

• Health care in Ontario is largely controlled by a self-regulating, entitled, special interest group of health care practitioners and institutions. It jealously protects its own and preserves its place. Indeed, a recent report by the Ontario Hospital Association has recommended the removal of any municipal representatives from hospital Boards of Directors. Burlington has agreed and complied.

• The senior ranks of the Ministry of Health and Long-Term Care is populated by administrators – many drawn from the ranks of hospital CEO’s and Chiefs of Staff. Indeed, even the current Secretary of Cabinet who is the Premier’s Deputy Minister and head of the Civil Service, is a past hospital CEO.

• There was, and I would argue still is, a tendency to protect the relative autonomy of the inter-dependent but still largely separate fiefdoms that comprise our health care network. For example, a 2011 ‘ad hoc’ workgroup study on integrated supply chain management for hospitals and health care institutions made sweeping recommendations with many projected savings and operational efficiencies. It challenged the existing hospital autonomy and made it no further than the responsible ADM’s desk.

• There is an inertia in the system; advances in health care technology and science are seldom matched by corresponding or equal advances in patient care. Patient-focused perspectives are slow to change in what is a closed system with senior staff turnover and renewal that is below that of private sector or other public sector institutions. The CEO of our local hospital, for example, told me in 2015 that he “was brought in to turn the hospital around”. He had already been there for six years at that point and is still there eight years later. His example is by no means isolated or atypical. It is no surprise then that the system overall is neither nimble nor free of an ingrained complacency.

• In terms of availability and access, I would argue that our “universal” health care system ceased to exist some time ago. Private clinics and supplemental health care services have grown to accommodate demand but place severe stress on mandatory provincial services. The system is under such pressure and the available resources are so scare that wait times for critical procedures are excessive.

• The general practitioner is positioned as the entry point to a largely autonomous specialist layer of medical expertise. Yet, there is virtually no synergy or consistent co-operation between general practitioner and specialist.

• Even at the General Practitioner level there is a loss of consistency; a rotation of nurse-practitioners, residents and clinical technicians often performing routine functions, increasing general availability of services but often restricting the practitioner’s interaction with his/her patients.

• The practice of rotating resources in hospitals – Hospitalists who serve as “the most responsible physicians” – provides a degree of nimble mobility but suffers from a lack of consistent physician interaction with long-term and chronic patients. The absence of a common, universal digital health record means that institutional knowledge of patients can be fragmented. The creation of a common digital health record was one of the nine enterprise strategic I&IT projects initiated in Ontario in 1999. It still does not exist.

• The provincial strategy for coping with the health care needs of an aging population is to supplement the in situ resource base of family and friends with needed supports; psw’s, health care nurses, paramedic resources, equipment and supplies. The general strategy is to try to keep chronically ill patients in their homes as long as possible. However, the system is poorly funded, poorly co-ordinated and suffers from a suffocating weight of incompatible rules, guidelines and protocols. For example, when a patient enters the hospital the responsible Community Care Caseworker cedes control to one of several Community Care Co-ordinators resident in the hospital (and these tend to be a revolving door) – the file passes hands. If the patient’s stay exceeds two weeks, then all established home services are discontinued and must be reinstated when the patient is discharged. The reinstatement can take weeks after discharge and result in a completely different set of service providers – churn, churn, churn.

• There are far too many cooks in the broth and hands in the pie with no recipe for effective co-ordination and co-operation. The system is designed to put a roster of pro tem available resources, specialist and clinical, at play in response to a caseload of patient needs that is growing at an alarming rate. This is an effective temporary coping strategy but, over time, removes critical consistency and depth from the provision of service.

• Institutional and clinical resources are far too scarce and in far too great demand to “take weekends off”. The provision of virtually all core health care services must be available and appropriately resourced for 7x24x365 service. Our local hospital, for example has only select departments, such as Emergency, operational on Saturday, Sunday and holidays.

So, what can be done to begin restructuring of the health care system and materially address its worst deficiencies?

• Establish a panel/panels of health care activists, patient advocates and health care practitioners/service providers to articulate a new vision of healthcare in Ontario working from the patient outwards. In other words, patient needs drive the service response rather than the service infrastructure determining the patient delivery strategy.

• Any recommendation to address the trusted placement of Ontario’s health care system in the hands of an “enlightened” cadre of vested interests is beyond the ability of any group, power or legislative authority to address. Our contemporary health care system is the result of generations of progressive bureaucratic control on the part of those who materially benefit from the system or recognize the electoral strength of its practitioners. There must be a willingness to neutrally review and rationalize current policies and practices for the benefit of the patient and the creation of additional resources.

• Initiate a series of interdependent, discreet actions to begin the shift from practitioner/institution-centric to patient centric service culture:

  • Term limits for hospital CEOs

  • Salary caps for hospital CEO’s

  • Mandatory municipal/regional representation on hospital boards

  • Provincial approval of all hospital boards

  • Provincial oversight of all medical/practitioner regulatory and disciplinary bodies

  • Mandatory % of all funds raised by medical institutions to be dedicated to front line patient care

  • Mandatory annual audits of hospital expenditures

  • Mandatory annual staff surveys

  • Relaxation of executive control over salary and wages budget allowing for more flexible staffing

  • Recognition of increased equivalencies for foreign trained medical practitioners

  • Relaxation of degree and practice requirements that only serve to protect the vested position of domestic practitioners

  • Wage scale parity and removal of personal remuneration contracts for all senior bureaucratic positions

  • Implementation of mandatory supply chain management for any institution that receives provincial funding

  • Extension of statute of existing stature of limitations for lawsuits involving medical malpractice and institutional lack of due care

  • Consolidation of the existing complaint and investigative agencies into a single Ombudsman to oversee complaints for doctors, nurses and hospitals alike

The concept of "universal healthcare" has been a component of the Canadian national psyche since Tommy Douglas began the movement, leading Saskatchewan to end privatized health care in the late 1940’s. Our current system, enabled through the Canada Health Act of 1984, places control in the hands of the provinces which receive federal funding as long as five basic criteria are met: public administration, comprehensiveness, universality, portability and accessibility. Arguably, these criteria are applied and executed quite differently across the country although the goal is uniformity and equity of approach. It is time that we, as a society, critically examine what we are willing to fund and what we can afford. It serves no one, particularly those in need of extensive support and care, to continue the myth that our health care, as currently structured and funded, can provide timely, effective and compassionate patient service to all.