Champlain CCAC rations patients’ personal care in their dying days

I am a General Practitioner practicing in Community Palliative Care in Ottawa. I, and several other physicians working in this field in Ottawa, see patients every day in their homes and at hospice. We care for people in the final stages of illness, to ensure comfort for them and for their families and caregivers. While our services are in constant demand, and sometimes patients have to wait for our care, I have always felt that we in Ottawa and the Champlain region provided a high level of palliative care.

For the last month or two, the Community Care Access Centre, or CCAC, has had to start rationing access to Personal Support Worker, or PSW, services, even to palliative patients. This year, they have seen an unprecedented increase in both the number and complexity of patients being referred for home care services. In order to meet their fixed budget, they have had to reduce access to Personal Support Services, such that most patients are having to be put on a wait list and wait up to weeks or even months to access this service that allows them to maintain their dignity at home by helping them get dressed and undressed, help them prepare a meal, help them bathe and use the toilet. Yet patients are being told there isn’t enough money in the budget to provide this care.

This affects even patients on the palliative caseload. It means that terminally ill patients are being denied assistance with bathing and personal care until they are so weak and unwell that they are essentially bedbound. And even then, some remain on wait lists.

Palliative patients have limited energy to use every day. If they spend it on bathing themselves, dressing themselves, etc, that means they have less energy to be awake and interact with family and friends, less energy to read or watch TV, less energy to enjoy even looking out the window. Often, their caregivers are elderly and have medical or physical issues that prevent them from assisting with personal care. Sometimes these patients live alone. Exceptions have been made, but not frequently enough. Dying patients are suffering because the government will not fund CCAC adequately. And transferring CCAC responsibilities to the Local Health Integration Networks will take these sorts of decisions even further from the patient and the bedside.

Also, hospital inpatients being discharged also join the waitlist, sometimes resulting in dangerous situations at home when patients don’t have the necessary supports. Even patients who already have PSW services may lose these if they are admitted to hospital for more than 14 days. We recently had a patient be discharged too early so that he would not lose access to his PSW, which was absolutely essential for his care.

At the same time, hospices are also stretched to the limit, causing them to tighten admission criteria.

Wait-listing introduces an unpredictable factor into end of life care planning that cannot be allowed to continue. Patients and families need to know that the support is going to be there when they need it. To do otherwise is cruel to patients and families and goes against our commitment to improve palliative care in Canada and Ontario.

The wait-listing is a result of the CCAC being overbudget on PSW services (not just palliative PSW services). This is due to three factors: PSW wages have gone up, and deservedly so; demand for PSW services has increased beyond expectations due to earlier hospital discharge and the general aging of the population; and the complexity of patients being cared for at home has increased dramatically, meaning more people at home need higher level of service to be maintained at home.

So there is currently a two-tier level of care in chronic and palliative home care. One tier for people who can afford to purchase more services to serve their needs, and another tier for people who have no choice but to wait for service, and suffer in the meantime. All because the government continues to increase bureaucracy and limit funding for patient care. Nothing in Bill 41 will alleviate the suffering of patients going without personal care in Champlain region.

My patients deserve to end their lives in comfort, in their own homes if they desire, and with the dignity of having their personal needs met. My patient who looks forward to sitting in her favorite chair, looking out her window at her garden, should not be told to just stay in bed because we can’t afford to get her the help she needs to get into that chair and back into bed. My patient who has always prided himself on getting dressed “like a normal person” each day, should not be told to stay in his pajamas because his dignity is not worth enough to our provincial government. My patient who would rather get assistance to use a bedside commode than use a diaper in bed, should be given that option as long as it remains feasible. My patients should not feel that they are an undue burden on their family by seeing them struggle with providing their care.

If we are serious and honest about improving the care of the dying and terminally ill, we must be serious about funding the personal care that palliative patients require. We must root out the waste that exists in the layers of bureaucracy, not just in the CCAC, but in the LHINs and the Ministry of Health, whose growth has well out-stripped the funding for palliative care in Ontario.

palliative-tree

 

Time to Clean House?

cleanup

As many of you were, I was saddened and somewhat angered by the news of Shawn Whatley’s resignation from the OMA Board today. Saddened because he has given so many of us an insight into the workings of our Association and a perspective from someone who has not only worked within the organization but who also sees where it can improve and change for the better. His blog and other writing is what has inspired many new physician leaders, including me, to get involved in shaping the future of the OMA.

I am angered as well, however. With Shawn’s resignation, many members have lost what they see as their voice on the Board. Board members, once elected, serve the members of the association as a whole, not their own particular constituency. This means that appealing to my District Directors has little impact if they feel that my opinions of views do not reflect the membership’s needs or wishes. The problem is that the Board of Directors has so infrequently asked for my advice as a member or indeed as a delegate, that I have no confidence in their ability to know that their actions work for the good of the membership. The most obvious example of this was the TPSA and the admitted failure of the Board to consider that membership might reject it.

But I do not want to dwell on the past. The present and the future are of much greater concern. Members who have followed Shawn’s blog and writings know pretty much where he stands. They also have the ability to have a two-way, open and public conversation with him through commenting on his blog. Shawn always responded to every comment, something that I have always felt was an exceptionally effective way to build on the conversations. In contrast to Shawn’s communications, the communication from the Board is limited to the carefully worded and parsed emails from the President that rarely give any insight into the thinking and discussion at the Board, and simply lay out the path that the Board has decided to take on any issue. The other communication conduits have been Town Halls, both electronic and in-person. I have yet to hear anyone comment that they were satisfied with these experiences, as these generally are non-candid affairs meant to verbalize pre-prepared speaking points.

So I am angry that the distance between members and the Board seems to be growing, not shrinking. Even though I am involved on my section executive and on the Governance Committee, I have witnessed the Board’s apparently insatiable need to be in control of everything. Health City Kingston needed to be examined with a fine-tooth comb to root out any unsanctioned advocacy. Rallies and Town Halls attended by members were labelled as partisan despite invitations to all political parties. Member communications have been held up until they became irrelevant. Even the Governance Committee’s plans to develop a plan to examine and reform the structure of the Board Executive, while completely within the scope of this committee, has to be “sold” to the Board before proceeding to inform members of this initiative and get member input.

I keep coming back to the question – Why did Shawn Whatley resign? Why now? Looking back, it is clear that Shawn (and others?) was likely not in favour of submitting the TPSA to members. Did he resign then? No. He didn’t resign when the Board hired Navigator to sell the TPSA to members. He didn’t resign when Navigator’s tactics bordering on harassment took place. He didn’t resign when the Board was admonished by Justice Perell prior to the GMM. He didn’t resign when the Executive did not step aside in the wake of the TPSA vote. I can only imagine how difficult it would have been to sit through all of these decisions, knowing that they were the wrong decisions, knowing that they were damaging the Association and the relationship with members, and still hanging on so he could do what little he could to represent members. So Shawn has resigned now, and there is no obvious reason that we know of that this happened. However, we can be safe to assume that either he could no longer stomach going along with whatever plan was now being agreed to at the Board, or worse, that whatever it is that the Board has decided to do, it is worse than the TPSA, worse than Navigator, worse than legal antics, worse than ignoring a 2/3 vote against an agreement that the Exec continued to defend even after the GMM, and continuing to consider that they had a mandate to represent members.

What happened? What is it that the Board has approved that Shawn could not even hold his nose and accept? I think members need to know. I think members have a right to know. And with that knowledge, I think members have a right to decide if the Board is truly acting in their best interest. I can only assume that Shawn provided the Board with a letter of resignation. If the Board feels truly blameless in his decision to resign, they should release his letter of resignation, with his consent, so that members can decide for themselves whether Shawn’s resignation reflects merely a personal decision that enough was enough, or if there are even more concerns of which members have a right to be aware.

Much attention lately has been focused on the Executive. In my opinion, however, assessing the Executive’s fitness to serve is not enough. Members, through Council, have a right to assess the ability of any Board member to continue to serve in the membership’s best interests. Council has a right to hear what the issues were that lead to Dr. Whatley’s resignation. If things have become severely dysfunctional and the Board’s business has been distracted by such a degree that a Director had to resign, then the Board’s fitness to serve members has to be brought into question.

With all due respect to the Coalition, the Executive doesn’t appear to be the whole problem. Today’s events shine a new light on that suggestion. The problems with the OMA governing bodies seem to go deeper. While a GMM may consider the motions brought forward by the Coalition, I fear that the real work needs to be done by Council, which has the authority and responsibility to remove any Board Members who are not performing their duties adequately.

I call on the OMA Board to address the reasons for Dr. Whatley’s resignation, release his letter of resignation and allow members to fully understand the events leading to this. Without this clarity, we can only assume that something egregious was about to happen or has happened. Without this clarity, the members will have no idea if we should still have hope and trust that the Board can fulfill it’s duty to members. In either of these cases, motions for removal of every remaining Board member would be in order, with notice of same being given as per OMA Bylaw 10:5:4:

The Council may, by a resolution passed by at least two-thirds of the votes cast at a meeting of the Council of which notice specifying the intention to pass such resolution has been given, remove any director or officer from office before the expiration of his or her term.”

There is no precedent for mass removal of Board Directors. One suggestion would be to appoint an interim Board made up of representative of the District Executives or members they nominate. This would be a caretaking enterprise until new elections to the Board can be held. Let’s face it: the government would be foolish to negotiate with our current leadership, who have shown themselves to be so out of touch with members. And members would be foolish to trust this group to present an adequate TPSA for ratification.

If there are Board members who feel that there is an alternative path to a positive outcome, I would be interested in hearing about it. Silence on this issue now will only ensure that a debate at Council will have the last word. For the good of the Association, for the good of members, for the good of our patients and our ability to contribute to shaping the health care system moving forward, we must have this discussion.

Is it time to clean house and move forward? I guess that depends.

 

Corporate Culture

I was reading an interesting article in today’s Ottawa Citizen (and published also in the National Post – don’t click here yet though). The discussion was about an organization’s corporate “culture” that has allowed sub-par effectiveness to continue for many years. It has also lead to decreasing engagement by it’s members, particularly moderate voices, over the last 20 years.

The organization seems to have “…an in-grained culture of secrecy and self-protection…”, and an instinct to “circle the wagons.” After one particular failure, there was denial and the sense that “they just can’t recognize that they had done something wrong.” After another scandal, the organization’s task seemed to appear as “a horrific cluster of the ineffective, the abusive and the self-serving.”

This organization is none other than the peacekeeping arm of the United Nations. This should be an object-lesson for all organizations whose mission is sidetracked by the internal culture of the leadership. Look at the loss of engagement seen in peacekeeping due to this culture: prior to the 1995 failure of UN peacekeepers to prevent the slaughter of Bosnians in Srebrenica, about half of all peacekeepers were from Western countries. By 2008, less than 10% of peacekeepers were provided by the West.

In the 1990’s, the Coalition of Family Practice and other grassroots groups became more active and eventually had influence at the OMA Board. People wonder why this didn’t result in wholesale changes to the OMA’s approach, why this didn’t result in a more activist agenda? Why, as family practice was literally dying in Ontario, did a group dedicated to the preservation of Family Medicine not succeed in making larger strides to do so? Eventually, the crisis reached its conclusion, the government threw a lot of money at the problem and reversed the cuts to medical school enrollment. I really don’t think that the 1990s’ version of a Coalition really moved things along much faster. Why not?

Maybe it is because of “Corporate Culture.”

I have read a lot of stories on Concerned Ontario Doctors’ Facebook page about hospital corporations’ approach to their fiscal challenges – increased workload on staff, reduced support systems, overcrowding, rationing, and then the repression of staff’s ability to speak out about what they see day after day. Are all these hospitals run by incompetents? Or is there a shared “hospital leadership culture” that allows senior management to look the other way, or not even have to be exposed to the results of the decisions they make, except on spreadsheets? In one hospital that I wrote about recently, the senior admin team walked around the hospital on a weekly basis, interacting with all levels of hospital staff, giving them an opportunity to literally show them the challenges they are dealing with. No one attacked them, everyone was respectful. The staff with the assertiveness to approach and engage with the admin were looked at as potential leaders, not potential insurgents. They were given roles on committees and task forces to improve the issues that they themselves identified. Did it work 100%? No, but it sure did change the tenor of the relationship between the leadership and the staff.

A friend of mine who has a background as a lawyer who worked on governance for non-profit organizations told me that the OMA doesn’t likely need a new corporate structure, but it needs a new corporate culture. It needs to go through a process that brings it back to its real purpose, to represent physicians. It needs to do the work to avoid the well-worn path of keeping information from membership and making decisions secretly and instead become a more open, responsive organization. It needs to look at long-held practices and perks that may influence who seeks out leadership roles within the organization and make changes that will allow for broader involvement. She has gone through this process with other organizations and this results in a better organization that is more engaged with and has more engagement from its members.

Putting new people into the same culture will not necessarily change the culture. The Board members take direction and advice from the staff who do the bulk of the work at the OMA offices. The right message has to involve them as well. Changing only the Board members may change the agenda of the organization, but eventually, the decision-making process will follow the same path. Without more fundamental changes to the culture at the OMA, there will be no improvement in its ability to engage with and make the most of the energy and expertise of its members.

So while other well-meaning groups, such as Concerned Ontario Doctors, the Coalition of Ontario Doctors and various Sections of the OMA all try to determine next moves, next ideas and next strategies, I hope that they all look within and ask themselves about how they can model a different sort of culture. I think the Strategic Working Group Facebook event is an interesting and novel approach to obtaining feedback and that this can be made better and more suited to physicians’ needs. I think that the grassroots advocacy needs to continue and should be supported by our organization to ensure that physicians are seen as a group that stands with patients and other health care professionals. I see no good reason why these sorts of activities cannot be undertaken under the umbrella of an invigorated OMA. I see no good reason why decisions by many groups still seem to be taken under a cloak of secrecy and why the people making the decisions feel unwilling to explain either the need for secrecy or the resulting decisions.

The culture of many of our organizations, including our Sections and Districts as well as the OMA as a whole, is in need of a culture shift. We need to acknowledge this and move forward with this work on this specific issue. The evolution of corporate structure is underway (see https://hbr.org/2014/12/understanding-new-power); the OMA has to lead the way out of the top-down, secretive castle and towards empowering and engaging members. Now, more than ever, we need bridge-builders, not tanks.

The wrong response to Bill 210 and LHIN engagement sessions

Today, we received the much anticipated response to Bill 210 from the OMA. While the analysis, prepared by Peter Brown and Leianne Musselman from the OMA Health Policy Department, does go through the entire bill and list the various possible areas of impact on physicians, there is no corresponding opinion from OMA leadership regarding the likely or possible implications of these areas of impact. We, as OMA members, are left to ponder the possible ways in which this bill may affect our practice, if it passes into law. Indeed, the harshest condemnation of the analysis is reserved for the areas in which the proposed law contravenes the Representation Rights Agreement (RRA), which protects physicians from direct negotiations with the LHINs or the MOH. In these cases, the analysis is quite clear and firm.

Perhaps a more focused reaction will be forthcoming from the OMA. So far, the main reaction, apart from threats to protect the provisions of the RRA, seems to be to actually encourage members to attend LHIN “consultation” sessions across the province. The OMA is going so far as to provide “toolkits” to members who attend these sessions, so that they can “raise questions and concerns” and report back to the OMA on the content of these meetings.

I feel this is the wrong approach to both the bill and the LHINs.

Firstly, apart from the RRA concerns, the OMA must be seen to take a stand on Bill 210. While there may be areas that are of little concern to physicians directly, the question is: Is this the direction that is likely to lead to improvement in our health care system? If not, why not? Making an analysis available without opinion leaves the impression that the OMA Board feels individual doctors should decide for themselves, and let the chips fall where they may. While I agree that we should all analyze the Bill to determine its effect on our own practices, our patients and our own professional lives, there is a bigger picture here. The control that the LHINs will have over physicians working in a FHT or hospice is extremely concerning. The fact that the Minister can add “any other person or entity or class of persons or entities that is prescribed” to the list of controlled persons/entities, means that no practice is truly immune to the intrusive and controlling provisions of this bill. Without a strong direction, physicians will exert very little influence on improving or changing this proposed legislation.

The other concerning section in the legal analysis is Heading 11: Sub-LHIN. This section implies that the OMA is surrendering any opposition to the exponential increase in administrative bloat in the health care system. In fact, it seems that the OMA is looking forward to exploiting the increased availability of “physician leader” roles despite having been proved so far to be ineffectual and non-influential:  The OMA analysis states: “Defining the boundaries of the sub-LHIN, the planning authority, governance structure and physician leadership opportunities are key areas of interest for the OMA and work is underway to identify opportunities that exist to ensure that physicians play a key role in shaping this approach to local health service planning.” So here we can see that the OMA will not oppose the expansion of the bureaucracy, which will suck ever more money away from front-line provision of care, and the Association will take part in developing these superfluous administrative structures that will grow and grow as we have seen over the last decade of the LHIN era.

Regarding the OMA comments on the ongoing LHIN “consultation” sessions, why don’t we call these what they truly are: a sham. The LHIN “engagement” sessions prior to the release of Bill 210 were quite obviously a sham (point out one change made to Bill 210 due to physician feedback), and the consultations done during the development of the Price-Baker report were….wait, oh yeah there weren’t any. What we do see, for example in the report of the Central LHIN, is that these organizations are claiming that dozens of physicians were involved in the production of a progress report to be used as the basis for implementation of Bill 210. The fact is that most of these physicians attended meetings for one reason: to “raise questions and concerns” about the Price-Baker report. Oh, and also, they did it for free. Why do we want to keep going back to these sessions, where well-paid bureaucrats sit smiling and dutifully recording physicians’ comments, which are then filed under “Irrelevant” back at the office. Based on past experience, these ongoing sessions provide no benefit to physicians: No changes will occur based on our feedback. No collaboration with the OMA will occur regardless of how many physicians “report back” the goings-on at these meetings. What will happen is that physicians will collectively donate huge amounts of time, representing tens of thousands of dollars in unpaid consultation services, for nothing.*For calculations, see below*

What do I advocate?

  1. A deeper and more relevant analysis of Bill 210 to identify for physicians the ways that this Bill will impact their autonomy, their physician-patient relationships, their control over their professional life, along with a financial analysis of the likely increased cost to the system to implement these changes.
  2. An opinion or series of clear opinions about the bill that can be clearly communicated to the media and our patients: What is good? What is bad? What suggestions do we have? It might be a good idea to consult with the Section of General and Family Practice regarding these opinions.
  3. Strongly advocate membership to refuse to participate in any further planning/engagement/consultation sessions with the LHINs in the setting of the current power imbalance between the government and the profession. Clearly state that negotiating Bill 210 in the absence of a fairly negotiated PSA (and the establishment of binding dispute resolution) goes against the interests of Ontario’s physicians. Make it clear that the OMA will advise all of its members to not cooperate with the planning or implementation of any of these changes until a PSA is reached and the major concerns we have with the scheme are addressed adequately.
  4. Publicize the government’s plan to expand spending on administration and the effect this will have on the PSB and hospital budgets in this era of “net zero” budgeting. This should be a no-brainer.
  5. Get political. Provide any interested politician or political party with the tools needed to fight this ill-conceived bill. Stand side by side with those who will publicly commit to protecting our health care system and who will acknowledge that without physicians’ true and valued input, the system will continue to flounder, patients will continue to die waiting for needed treatment, families will continue to struggle with inadequate resources to care for loved ones, and all health care providers will continue to bear the burden of trying to stay afloat under the heaving bureaucracy.

And for those of you who espouse the “if you aren’t at the table, then you’re on the menu” philosophy, I have news for you: Physicians are on the menu. They ARE the menu. Sitting at the table will not alter that, but you might just get caught snacking on one of your friends.

 

 

 

 

*(77 physicians consulted with Central LHIN. If we assume 2 hours per physician, this is 154 hours. Meeting honorarium for OMA committees is currently $114/hr plus travel, but lets forget travel: the time itself amounts to $17,556. Multiply by 14 LHINs and that gives a very conservative estimate of $250,000 that has already been donated. This is a fraction of what will be expected before the Bill is passed and forever after.)