Liliane Bondoux and Princesse
September 4, 1963 - June 20, 2004
Very sadly, on June 20th, a member of the PCIL/CPVA family passed away. Liliane Bondoux joined us in 1992, and many of you are aware of the trail she blazed in making it possible for other people requiring special technology to live in the community.
Liliane gave far more than she got back and her contribution to the cause of independent living was incredible. I know we shall all miss her very much.
Elaine McNaughton
Executive Director
June 21, 2004
Making it Work - There is Life After the Hospital
"I'd say the words 'I'm on a ventilator' and hear the click at the other end of the phone,"
Liliane explained. This was the response Liliane Bondoux received from attendant care
service providers in the Ottawa-Carleton region as she fought to leave the Ottawa
General Hospital. Time and again the issue of liability arose. Who is responsible if
something goes wrong? Service providers were not sure. The Ministry of Health provided
no guidelines to attendant care providers in 1991 regarding services generally considered
to be controlled acts under the Health Disciplines Act.
It was in the fall of 1991 when I received the call from Liliane's social worker at the
General. The worker was obviously going through some list of community resources
when she called me. She was also obviously waiting for a swift end to the call when she
said her client was ventilated. There was a moment of silence after I said I'm still
listening,' then the worker quickly said she would have the client call me direct because
'this was a very together client.' No more than 10 minutes later I received a call from
Liliane Bondoux. She gave me the cold clinical run down of her illness with all the
attendant signs and symptoms, said she was really glad to speak with me and when was I
going to come meet her? She was 'living' in the ICU of the Ottawa General Hospital.
I went that week and was surprised when I met her. A bright, attractive, sharply dressed
young woman with really neat glasses was sitting in her wheelchair, in her cubicle,
attached to what then looked like a great deal of equipment. Her attitude and appearance
seemed so incongruous as I looked around at some very ill people and some very busy
nurses. Phrases like 'ICU psychosis' popped into my head from my days as a student
nurse.
I sat down on her bed- there were no chairs- and Liliane took over the conversation.
Eighteen months previously, Liliane had weaned herself off the ventilator she had been
using for four years. Those four years had been spent in acute care hospitals in the
Pembroke and Toronto areas, including nearly eighteen months in the Sunnybrook
surgical ICU. Life in a designated trauma unit convinced Liliane that there were going to
be other options. While Liliane faced enormous personal risk and her doctors were
tremendously skeptical, Liliane stated categorically, "For me, living in an institution was
no longer an option. If using a ventilator meant spending the rest of my life in hospital, I
was going to get off the vent or pull the plug".
She lived in the community, without any services, for those eighteen months and suffered
regular, severe, respiratory infections. Doctors gave her few options after the last
infection and subsequent emergency hospitalization - return to a ventilator or die. Liliane
said she agreed to be ventilated once more but made it clear to everyone that if
community living was not an option she would demand to be disconnected. Perhaps
because of Nancy B's. court case, those working with Liliane realized the seriousness of
her position.
At the same time Liliane was determined to find a community living option to
institutionalization, CORDI, the Carleton Ottawa Residence for Disabled, was reexamining
its role vis-a-vis its traditional consumer - the spinal cord injured adult and the
congenitally disabled young adult - and the directions proposed by Ontario's Ministry of
Health under the Long-Term Care agenda which supported a shift to community care
versus institutions.
CORDI, a Cheshire Homes Foundation affiliate, was created in 1974 mainly through the
efforts of a group of social workers at the Royal Ottawa Hospital. They felt a great deal
of frustration at having to institutionalize medically stable, physically disabled, adults
simply because no care was available in he community.
It opened as an eight bed group home in 1975. Through a funding arrangement with the
Ministry of Housing, all CORDI group home clients are tenants. Ministry of Housing
funding covers the hard costs of maintaining the physical plant. 100% of staffing costs
are covered by the Ministry of Health. In 1987, a transitional living program was
introduced. Previously, the group home had been a permanent residence but as other
options developed, it was felt the group home could be better utilized as a transitional
living service. Twenty tenants inhabited the group home over the period 1975-87. From
1987 to 1993 thirty people were served. In 1989, CORDI II opened, providing 24 hour
attendant care in an apartment project and, to those wishing it, case co-ordination and life
skills assistance, both on- and off-site. By the fall of 1990, CORDI had begun an internal
conversation about directions.
A preliminary environmental scan showed some very interesting potential for service
directions. Attendant care services to persons who were technologically dependent were
non-existent in the region outside of institutions, yet there seemed no real reason why this
should be so.
Attendant care is a unique profession. It is unregulated. It is generally provided in
peoples' own homes. It is done at the direction of the consumer and it is generally
sponsored by small organizations with very responsive bureaucracies. Restricting the
delivery of attendant services to a limited range of consumers seemed a tremendous
underutilization of the service.
CORDI's long-term planning committee recognized an opportunity to develop services
for high care users by fully utilizing the potential of trained attendants and by taking
advantage of services that already existed in the community.
A client profile was developed of the potential new client. They would need:
a) to meet existing Ministry guidelines about ability or potential ability to direct staff;
b) to have a good understanding of their particular condition and its risks, i.e., just as
quadriplegics must have a knowledge of such potential emergencies as dysreflexia, so too
would high care consumers require knowledge based on their unique situations;
c) to be eligible to receive services, such as Homecare, for tasks we could not perform
(such as IV home therapy);
d) to understand the potential risks of living in the community and be willing to accept
such risks;
e) to have a supportive family physician.
The provincial mood was one of reflection, as well. During 1990 and 1991, Ontario, like all other provinces, was facing a major cash crunch for health care and other services.
The provincial government tackled the issue of long-term care. There was much talk and
consultation about the shift from institutionally-based care to community-based care. A
1990 study commissioned by the Ministry of Community and Social Services, by
Catherine Mather and Associates, stated categorically that attendants could fill a
significant void if they were permitted to carry out what were generally felt to be
regulated tasks for clients for whom they were really routine activities of daily living.
Tasks such as insulin injections, tracheostomy care and suctioning, digital disimpaction
(which is still not carried out by all attendant care agencies in Ontario - some still use
VON) and urinary catheterization (again, not carried out across the board) should become
'routine activities of daily living'. (Services for Persons with High Care Needs Living in
Ontario. Catherine Mather and Associates Consultants Inc., for the Ministry of
Community and Social Services, 1990.) Figures from this study noted that 11 of 12
institutionalized, ventilated adults indicated a desire to live in the community.
While there was a tremendous potential for change, repatriating Liliane to the community
was going to prove much easier said than done.
It was highly unusual for a community based attendant care program to accept someone
directly out of ICU. Someone who couldn't be on a regular ward because nurses hadn't
been specially trained is not generally considered to be the ideal attendant services
consumer. Be that as it may, Liliane had it all as far as I was concerned. She was with it,
she was fully cognizant of her condition and the equipment she used, she was courageous
and had a totally irreverent sense of humour that was to see us through many tense spots.
Normally, our intake is comprised of an interview with the potential tenant and the
receipt of medical records. The physical requirements are matched up with the time
available in the program. For example, if a person requiring three hours of assistance
daily moves out then a person requiring three hours assistance enters. We had no way of
really knowing what Liliane would require because we had never dealt with her type of
needs before. In addition to Liliane having a degenerative neuromuscular disordercentral
cord myopathy- she also had a central venous line (Porta-Cath) through which she
self injected analgesics for chronic pain control. The line was also the route for
continuous IV infusions of fluids used to keep a line open for the antibiotics necessary to
combat frequent, severe, systemic infections. A second IV pole was attached to her chair
to accommodate parenteral feeding equipment. Liliane had undergone extensive
abdominal surgery due to intusseption a few years before. These feedings were
administered through a small gastrostomy tube placed directly in the intestine through an
opening in the abdomen. When Liliane became obstructed, she would self-insert a nasogastric
tube connected to drainage suction.
Any one of these technologies would have, and did, preclude her acceptance in any other
attendant care program. All of them together, along with the unstable nature of her
condition, would have set off all kinds of alarms for me had not several things been very
clearly in place:
Liliane was THE client to pilot this direction change- she was ready, willing and able to
deal with the scrutiny that would be accorded this move;
CORDI staff was excited by the challenge and were ready to do what was necessary to
make the placement work;
CORDI's Board of Directors saw managed risk as an acceptable way of doing business;
CORDI is very committed to the concepts of independent living, including the right to
self-determination and the dignity of risk.
While we knew no steps would guarantee that this placement would be problem free, we
did believe that the risks could be managed. We had a number of resources at our
disposal.
Cheshire Homes Foundation affiliation
In Ontario alone, seventeen Cheshire affiliated organizations, operating twenty-three
projects, deliver the entire range of possible services to persons with physical disabilities.
Several of the projects in the immediate Toronto area served ventilator users. It took me
no more than three phone calls to confirm what I already suspected. Providing services to
persons using ventilators was generally no more difficult than, for example, serving
people who were higher care quadriplegics. The key was always the consumer's choice
about the level of risk that was acceptable to her. Liliane was exceedingly clear that any
risk was hers alone. Still, it was necessary to ensure that we were not acting without due
caution for two basic reasons. We always strive to provide the best services possible to
our tenants and we knew that any preventable problem that was ignored or overlooked in
the beginning that caused failure later would only hamper other ventilator users from
moving into the community.
Existing Services
We looked at what was available in the Ottawa Carleton region:
911;
Lifeline;
very close proximity to tertiary care centres;
VON who were mandated to provide care that we could not i.e., home management of
IVs, tracheostomy changes, sterile care of the Porta-Cath central venous line;
for-profit vendors of ventilator equipment that had 24 hour accessibility to espiratory
Therapists and back-up equipment; and
Liliane had a committed, caring community
physician who managed her medical care.
In the final analysis it was this last point that really became the deciding factor. It was
this doctor/ patient relationship that would ensure that the attendant care staff was not
going to be in an untenable situation. All decisions about her medical care would be
strictly between Dr. Eaton and Liliane. Our staff would be providing services for which
we could be safely trained such as suctioning, which would be performed under Liliane's
direction and which required no medical or nursing judgment. Liliane's physician proved
to be an invaluable advocate when dealing with the more complex relationships in the
hospital bureaucracies and the homecare system.
THE MOVE TO THE COMMUNITY
Following our initial meeting in November, a case conference was arranged for
December. Every conceivable discipline was represented. Liliane had only been on a
regular ward for a few weeks by then. There was certainly some medical skepticism
about Liliane moving directly from the Ottawa General Hospital to CORDI. One
physician, in particular, felt that Liliane could benefit from a few weeks at the Royal
Ottawa Regional Rehabilitation Centre (RORRC), to help 'acclimatize' her to a less
medical model of living. Liliane could be discharged to CORDI from the RORRC. The
drawback with this plan was that that hospital's administration was opposed to this move.
Nurses would have to be trained as the RORRC did not accept ventilated clients and the
issue of cost arose. Our position at this first case conference was that we were very
positive about the potential move but that a final decision had not been reached. We still
had to conduct our own intake interview and we had to be assured that the General would
provide the necessary training to our staff before discharge.
In January, our formal intake interview was arranged between me, our Manager of
Tenant Services and Liliane. There was an unexpectedly funny highlight in the interview.
Our Manager of Tenant Services does not have a health care background. She did not
have any experience with ventilators. She had no idea she was breathing in time with the
machine until she hyperventilated! Kathy eventually regained her normal rhythm and we
informed Liliane and the social worker of her acceptance into the program.
Later that week, Liliane was informed that the RORRC would take her after all. She
would go there the end of January, 1992. As agreed, the Ottawa General and Liliane
provided a half-day seminar to the staff group regarding the physiology of mechanical
ventilation and oriented staff to the equipment itself.
Staff at RORRC ran a training session for us on suctioning technique and use of the
equipment but the placement itself was unsuccessful. A doctor at RORRC told Liliane
her goals of community living and returning to work were unrealistic. RORRC staff felt
she should not move to the community while on narcotic pain control. RORRC
discharged her back to the Ottawa General on March 17, 1992.
We had been very aware that Liliane was a regular medication user for chronic pain
control. Our view was that she had been a user since before we had met her, our
assessment of her level of functioning had been formed while she was a regular user and,
finally, our experience with another severe chronic pain sufferer was that there were
alternatives to be explored. We had made little issue of this, but the medical community
was really quite concerned. RORRC told Liliane she could return to them once she was
drug free for three weeks. They were making no distinction between a user with a choice
they controlled and a user whose choices were medically controlled. We were extremely
aware that Liliane's only focus was to leave the institution for the community. Forcing
her to deal with issues that could be dealt with in the community after discharge seemed
counterproductive. During a second case conference we made it clear that we were aware
of the drug use and it did not affect our decision at all. By this time, preserving Liliane's
emotional health was the primary focus. Getting her to the community would do that. Her
community physician did in fact help Liliane make the switch from Demerol to a dilaudid
pump which remains effective today.
The delay was extremely frustrating for us. It was also a financial drain on us as we had
maintained the open bed since November, 1991. It was now mid-March, 1992. We had
sent the entire staff group for a half day training session with the General's RT and
Liliane prior to Liliane's transfer to the RORRC. I had sent the entire staff group for
suctioning training while Liliane was in the RORRC. We were now faced with another
delay of weeks where staff was not going to be able to reinforce their skills through
application. We took some advantage of the delay, though, to have Liliane visit the group
home on several occasions and for varying lengths of time. This gave us a chance to 'try
each other on' a bit before the final move. During these visits we were able to ensure that
the physical environment was reasonably adequate, although, because of the fact that the
group home was retrofitted and not purpose-built, Liliane still can't get into her bedroom
if the footrests are on her chair.
As tentative discharge dates approached and went several times, staff became somewhat
anxious. There was the quite normal concern about dealing with a new and intimidating
technology. By far,however, the most difficult concern they faced was the question of the
DNR order. Liliane had informed us during her intake interview that following her
resuscitation from a seizure and subsequent asystole, Christmas Eve, she had requested
the Do Not Resuscitate order. What was a simple and straightforward issue for the
hospitals, which have long experience and well established protocol for such orders, was
absolutely foreign to us. Staff was quite convinced that should she arrest they would
initiate CPR in any case. They were frightened that they could not respect her wishes
under such circumstances. Liliane was the first client we would serve whose potential for
sudden death felt so immediate and Liliane's wish was to die at home. CORDI's Board of
Directors felt that, as we had no protocol or experience with such a situation, a
physician's order would be useful. Liliane's doctor complied willingly but the order was
written on his regular prescription pad and it remains one of the strangest 'memos' we've
ever had on the staff board!
By the April 14 discharge date the following had been done:
1) Staff had been trained in the following additional areas:
a. physiology of mechanical ventilation
b. cleaning of the ventilator
c. cleaning of humidifier
d. replacement of filters
e. cleaning of circuits
f. tracheal suctioning
g. stoma care (tracheostomy site and PEG site)
h. hanging of IV solutions and Osmolyte (tubing changes by VON)
2) A commercial vendor had delivered the back-up ventilator, portable suction
equipment, GOMCO, suction equipment, backup ventilator;
3) VON visits were in place (primarily for monitoring);
4) Central dispatch of the ambulance service had been notified of Liliane's move to
the community;
5) Supplies of IV solutions and Osmolyte had been delivered;
6) Liliane had purchased her bedroom furniture and personal items;
7) Extra staff had been scheduled for move-in week (done for all new tenants);
8) The Board introduced a no-smoking policy that proved difficult for some tenants
who could no longer smoke in the group home.
CHANGES IN ONTARIO'S REGISTERED HEALTH PROFESSIONS ACT
On January 1, 1994 sweeping changes took place in Ontario in what was formerly known
as the Health Disciplines Act. Twenty-two new disciplines were added to the act,
disciplines such as respiratory therapy and dental hygiene.
The changes coincide with the province's development of standards and guidelines for
workers trained in personal support (WTPS). WTPS will become a broad category of
workers that includes attendants, homemakers and health care aides. The government is
committed to fund the training for these workers. There is some indication that District
Health Councils will be directed to specifically identify a certain percentage of their
funding envelopes for training.
Throughout the development and consultation process for the new legislation, consumer
advocates for the physically disabled argued successfully that certain activities destined
to become part of the new legislation as Controlled Acts should not be considered
controlled acts when performed as part of the regular physical care routine of a person
with a disability.
A draft paper, released in the fall of 1993, outlined the circumstances under which a
Controlled Act could be exempted as a 'routine activity of daily living'.
While there is still debate about the activities, the document should go a long way to
assisting organizations in expanding their services to include users of ventilator
equipment. It offers the first provincial guidelines regarding these services and is the first
document that outlines and recognizes the responsibility of the client, the worker and the
employer who may also be the client. It sets the stage for upcoming pilot projects in
direct consumer funding which advocacy groups in Ontario have been demanding for
several years now.
It also clearly distinguishes between the client who is responsible for directing all aspects
of their care and is therefore able to assess that the activity falls into the routine activities
of daily living, and the client who is unable to direct all aspects of her care and for whom
the routineness of the activity will be assessed by a professional. This particular feature
of the draft should clarify issues around the question of “who is responsible if something
goes wrong?”. Arguably, lack of clarity in this regard has prevented many consumers
from accessing services in the community and has prevented many organizations from
providing services to more high care consumers.
There seem to be two principle barriers to access of services for persons who are
ventilator dependent. One is service provider concern regarding liability. The other is
funding.
“I'm in control of my life, again. With attendant care, I direct the services, with nursing
care you can't. I have been involved with Computerwise and the Neil Squire Foundation.
Once I get a home computer system set up and brush up on my Desktop Publishing skills,
I want to start a newsletter for CORDI tenants. Eventually, I hope my goal of public
advocacy regarding ventilation and community living will be realized. As a Board
member of CORDI, I am helping to establish CORDI II, Ontario's first dedicated French
language attendant service for high care users. CORDI II will open in 1995. I couldn't
have done all this from a hospital bed", states Liliane.
In Ottawa-Carleton, there is now tremendous potential to provide community based
services to ventilator users. New provincial guidelines for workers trained in personal
support gives much needed structure. Concerns of service providers about how to provide
a responsible service can be more readily addressed. Should the task group's proposal be
successful, more appropriate funding will be available. The goal of accessible community
services has real potential for realization.