Heidi Janz, Ph.D. Assistant Adjunct Professor John ... · Assistant Adjunct Professor John Dossetor Health Ethics Centre ... Independent Living Movement by circa 40 years. Health

Heidi Janz, Ph.D.Assistant Adjunct Professor

John Dossetor Health Ethics CentreHealth Ethics Seminar

January 17,2014

Alberta Health Services’ decision to reduce the number of homecare service providers in Alberta from 72 to 13 in June 2013 disrupted the lives of hundreds of elderly and disabled Albertans, jeopardizing both their well-being and safety. It also threatened to set back the Independent Living Movement by circa 40 years.

Health Ethics Seminar 2

1. Identify specific ethical gaps that occurred during this episode, from both a Health Ethics and a Disability Ethics perspective.

2. Examine the ways in which the classical disconnect between the Medical Model and the Social Model of Disability underpins and exacerbates the conflict that characterized this episode.

3. Explore ways in which ethical considerations might be more systematically incorporated into future contract vetting processes.


Received by Creeekside Support Services in late May of 2013.

Creekside Support Services (CSS) is the user-run Homecare service provider through which I, and fourteen other individuals with disabilities who live in Creekside Condominiums, manage and receive our own homecare (read: personal care) services


In this letter, AHS informed Creekside Support Services that our proposal was not among those that had been selected to receive a contract to provide homecare services.

The letter went on to matter-of-factly tell us that, “Representatives from Zone Operations will begin contacting service providers the week of June 3rd to discuss next steps, contract terms, and transition planning for home care clients.”


This letter, which we received at the end of May 2013, was the first, and only, direct communication that we had had from AHS since the Request for Contract Proposals was issued back in early February 2013.


The entire proposal submission process was veiled in a strict code of silence.

AHS informed all potential applicants that, if they discussed or asked questions about any aspect of the Request for Proposals with other applicants, anyone from AHS, or anyone else at all, they would automatically be disqualified from submitting a proposal.


From an ethical standpoint, such an overt lack of transparency in these processes raises immediate red flags, particularly given that AHS identifies transparency as one of its “Core Values” in its Code of Conduct(February 2013).


Respect Accountability Transparency Engagement Safety Learning Performance


In addition to this initial ethical breach of the core ethical value of transparency during the proposal submission and vetting process, I contend that equally troubling breaches of four more of AHS’s core ethical values, namely Respect, Accountability, Engagement, and Safety, characterize AHS’s efforts to streamline the delivery of homecare services to elderly and disabled Albertans.


The Oxford English Dictionary defines respect as “deferential regard or esteem felt or shown towards a person.”


AHS’s Code of Conduct identifies the following behaviours as constituting respect: ◦ Valuing each other and each patient/ family/client

we interact with as individuals◦ Being compassionate◦ As staff, treating people with dignity, fairness and

respecting confidentiality ◦ As patients, treating staff with dignity, fairness and

respect ◦ Being sensitive to diversity ◦ Being inclusive and recognizing contributions


In a contemporary Health Ethics context, respect is most often associated with the ethical principle of autonomy.

Within this context, respect is commonly interpreted as deference to a patient’s or client’s right to self-determination.


Decisions were made and implemented from the top of a bureaucratic juggernaut down, without any kind of provision whatsoever being included for the input of people whose safety, independence, and well-being would be most directly affected by these decisions.


AHS demonstrated an utter lack of respect for clients with disabilities, who, a generation ago, had fought for, and won, the right to live independently in the community and receive homecare services which they themselves directed.

Simply put, the kind of across-the-board “streamlining” of homecare services that AHS intended to implement would effectively set the clock back thirty years for Albertans with disabilities.


Such “streamlining” of homecare services would mean that we would no longer have any say whatsoever in where, when, or by whom our essential, intimate homecare services would be provided.


In a matter of weeks from receiving our “Dear John” letters from AHS, clients with disabilities who received our homecare services through the user-run cooperatives at Abbey Road, Art Space, and Creekside would be literally forced to let go all of our current aides, many of whom have worked with us for ten years or more, and entrust our care, and thus our lives, to a big-box, for-profit homecare provider, over which we would have no control whatsoever.


Displaying integrity and ethical behavior Being honest Doing what we say we are going to do Taking responsibility for our own decisions and

actions, and holding others responsible for theirs Building trust and being trustworthy Evaluating and improving the quality, safety and

effectiveness of our services and the outcome of our decisions

Promoting excellence, innovation and continuous improvement through using best evidence/best practice


The 3 elements of AHS’ conceptualization of Accountability that I would like to consider in relation to this curious case of AHS Homecare versus Albertans with disabilities are:◦ Displaying integrity and ethical behaviour◦ Building trust and being trustworthy◦ Evaluating and improving the quality, safety

and effectiveness of our services and the outcome of our decisions.


Discussion of ethical behaviour in the AHS Code of Conduct is predominantly concerned with the interaction between individuals working for AHS and AHS itself. There is very little direct discussion in AHS’s Code of Conduct, even in general terms, about what it means for individuals working with AHS to “display integrity and ethical behaviour” in their dealings with patients/clients/families.


While acknowledging that the AHS Code of Ethics appears to be designed for internal use, and is thus primarily concerned with the internal functioning of AHS, I would, nevertheless, suggest that the lack of any definition or direct discussion of what “integrity” and “ethical behaviour” look like in terms of AHS’s dealings with its patients/clients is indicative of a significant gap in AHS’s Code of Ethics as a foundational, prescriptive document.


I would further suggest that it is precisely this absence of clarity regarding exactly how members of AHS are to demonstrate “integrity” and “ethical behaviour” towards their clients that contributed significantly to AHS’s mis-handling of its efforts to streamline Alberta’s Homecare system.


The AHS Code of Conduct also links the core value of accountability with the practices of building trust and being trustworthy. While this is an entirely logical and legitimate link to make, it is unfortunately entirely antithetical to the way in which AHS conducted itself in its endeavor to streamline homecare services.


The primary reason for this can be traced back to the lack of transparency which characterized AHS’s handling of its restructuring of homecare services from the beginning. It seems to me that it is very difficult to build trust in an atmosphere of secrecy and silencing, an atmosphere in which critical information is routinely withheld from the people most affected.


Realizing the grave danger in which AHS’s canceling of our contracts put our way of living, and indeed our very lives, we felt compelled to launch a public awareness campaign to try to affect the reversal of what seemed to us an entirely wrongheaded and unethical decision by AHS.


Our primary weapons in this campaign were traditional news and social media. I set up a Facebook page entitled “Stop the Alberta Government’s Home Invasion and Assault on People with Disabilities”. This Facebook page served as a repository for a collection of news articles, blog posts, and online discussions about AHS’ decision to change homecare.


My friend and neighbour, Cam Tait, a former reporter with the Edmonton Journal, dedicated his already-established blog to features, interviews, and posts by guest bloggers (including myself) about the impact that AHS’ decision to arbitrarily change homecare providers would have on service-users and current homecare staff alike.


At the first meeting between homecare service users at Abby Road and representatives from their new service provider, Rivera, residents were told that, while workers from Rivera would still assist people to eat, they would not have time to do meal preparation. Abby Road residents who required meal preparation were consequently advised to look into getting Meals on Wheels. As many homecare users in this situation are totally unable to prepare meals, this on-site meal preparation was an essential part of our life supporting conditions.


Developments like this beg the question as to why, at this point, AHS Homecare did not direct the new provider to the section on accountability in its Code of Conduct. This section lists, as an attribute of accountability, “Evaluating and improving the quality, safety and effectiveness of our services and the outcome of our decisions.”


On a Monday morning, a week into our campaign, Cam Tait and I shared a DATS bus. “Heidi, what do you think--” Cam asked me, “What do you think of inviting Allison Redford for coffee on the blog?”


It took me a second or two to realize that he was serious. I shrugged, “Sure, why not? It certainly can’t hurt!” Cam composed the invitation and posted it on the blog that afternoon.


The next morning, I had an idea and emailed Cam: “Hey, do you think maybe I should email the invitation you posted on the blog directly to Redford’s office?” Cam’s reply was almost instantaneous: “Not now, but RIGHT NOW!” Within five minutes, the coffee invitation was emailed to the Premier’s office and cc’d to the Health Minister, Fred Horne.


AHS’s failure to engage with clients who have disabilities led directly to our safety being compromised.

My question to representatives of AHS Homecare: ““The first principle in AHS’ Code of Conduct is: “Treat people with respect, compassion, dignity and fairness.” Please explain to us how AHS’ decision to unilaterally impose its will on Albertans with disabilities without any form of consultation whatsoever complies with this principle?”


Mantra repeated by representatives of AHS Homecare: “Your care-plans will continue to be followed to the letter; the quality of your care WILL NOT CHANGE.”

Alright then… “How would an outside homecare provider be able to provide 24/7 service, when the bylaws of our condo board would prohibit them, as ‘outsiders,’ from using the office and staff room space currently used by our ‘in-house’ support services?”

The only response offered by the representatives of AHS Homecare: “The quality of your care WILL NOT CHANGE.”


Although it was painfully obvious to us as homecare service users, many of whom have complex health needs, that the question of maintaining 24/7 service was a safety issue of the utmost importance, the representatives of AHS Homecare seemed to view it as something of a side issue.


Even when directly confronted with the demonstrable danger that a probable lack of round-the-clock homecare coverage under a new homecare service provider would pose to our safety, the representatives of AHS Homecare made no real attempt to engage with us and address our concerns about either the lack of ethical consideration that had characterized AHS’s efforts to streamline Homecare, or, our continued safety and security if and when the dictated change in homecare provider took place.


The cardinal principle of Disability Ethics is to ensure that the perspectives of people with disabilities are brought to bear on ethical issues related to disability.

Entire process, from the Request for Proposals, to the vetting of proposals, to the awarding of contracts, to the making and execution of transition plans, seemed to take place in an ethical vacuum in which the short-term priorities of cost-effectiveness and efficiency trumped all manner of ethical considerations and concerns.


AHS was operating strictly from a Medical Model of disability, focusing solely on the physiological impairments of its clients, and the physical care that those impairments necessitate. This sole focus on the Medical Model of disability caused and/or enabled AHS to ignore the social and ethical aspects of their clients’ disabilities.


AHS’s tunnel-visioned focus on the physiological impairments and physical care of its clients reduced those clients to the number of care-hours, care-plans, and care-dollars they required, to the exclusion of any other aspects of their clients’ lives. As a result, extraneous considerations, such as their clients’ right to self-determination, simply did not factor into AHS’s decisions or actions.


The morning after our horrible meeting with AHS Homecare brought game-changing news: Cam got an email from Premier Redford’s office; she and Dave Hancock, Minister of Human Services, wanted to meet with us that Sunday morning.

On the following Sunday morning, Larry Pempeit(the Founder and President of CSS), Cam Tait, and I went to the Legislature to meet with Premier Redford and Minister Hancock. (Personally, I was especially grateful that this miraculous meeting was taking place on a Sunday morning because it meant that the congregation of my church was providing us with real-time prayer backup!)


During the meeting, we shared our concerns about the heavy-handed way in which AHS was changing our homecare provider without including us in any sort of consultations. Premier Redford was especially interested in how this was handled. “I want to make sure I understand this,” she said several times while her aides were busy taking notes. She said she was unaware of how things were handled, especially when we service users have had direct input in the care we get.


We told her we planned to fight the battle to the end, July 31, when our contract was due to expire.

Premier Redford said she would look into the Creekside situation as well as that of Abby Road and Art Space. “We have work to do,” she said near the end of the meeting.

As we left the meeting, we couldn’t help but feel a new sense of hope for our situation.


Two days after our meeting with Ms. Redford, came the announcement by AHS that they were reinstating the contracts of Creekside, Abby Road, and Art Space.


I cannot help but remain fearful of a healthcare system that can so easily ignore or dismiss basic ethical principles, such as beneficence and respect for patient/client autonomy, when implementing policies it deems to be “fiscally-responsible.” The fact is that the government’s reversal of its decision to streamline homecare by reducing the number of service providers was only partial. This past summer and fall were punctuated by news stories about elderly people and people with disabilities being left high and dry (or, rather, laying soiled on the floor) by their new homecare providers, who, as it turns out, lacked the staffing resources to meet the demands of their new contracts.


A review of AHS Homecare’s contract proposal soliciting and vetting processes, which was released in July 2013, cited complaints from unnamed contract applicants who “were upset that other service providers that had approached the Premier received preferential treatment and in their view this option should be available to other providers” (p. 89).


I find it bitterly ironic that our, desperate, effort to save our ethical right to autonomy should be portrayed by anyone as unethical! This really speaks volumes about the complete and utter lack of awareness and/or consideration of ethical issues involving people with disabilities that characterizes our current healthcare system.


Create a mechanism through which the vulnerable constituencies which AHS serves (for example, seniors, people with disabilities, people with mental health care needs, etc) could have representational consultative input into AHS policy decisions which impact their respective populations.


Such a mechanism for systematic consultations with vulnerable constituencies on relevant AHS policies could take the form of an Advisory Committee which would have regular, direct contact with AHS for the purpose of seeking to ensure that AHS takes the perspectives of vulnerable populations into account when making policy decisions. However, innovation of this kind would require a level of concern and commitment to engagement within AHS that, from our recent experience, remains sorely lacking.


No guarantee that the same breaches of ethics and common sense which characterized this curious case of AHS Homecare versus people with disabilities will not be repeated by future Health Boards.

In this sense, it is likely that, while the case of AHS Homecare versus people with disabilities may remain curious, it will, sadly, not remain singular.


Are there any questions or comments?


51Health Ethics Seminar

Documents

Heidi Janz, Ph.D. Assistant Adjunct Professor John ... · Assistant Adjunct Professor John Dossetor Health Ethics Centre ... Independent Living Movement by circa 40 years. Health