Meet Fatima-“As if your next breath could be your last”

“As if your next breath could be your last”:
Some Systemic Challenges Facing Persons with Limited Ventilator Supports

Meet Fatima

Fatima is a wife and mother in her thirties. She provides emotional support and guidance to her teenaged children and companionship to her husband. Five years ago, she was diagnosed with muscular dystrophy, and her condition has progressed to the extent that she requires ventilator support twenty-four hours a day.

Very active in her community before she became ill, she strongly values what independence remains.

But Fatima lives in fear:

My greatest problem is that I am ventilated and trying to live in the community. Being ventilated, I am always at risk if anything would go wrong with my breathing equipment then I may only be able to live few seconds till emergency care arrives.

Currently, many people with respiratory challenges similar to hers live in Long Term Care facilities at great expense to Ontario’s health care system. Such places can create social isolation and above all, are not suitable for raising children.

As a result, people like Fatima face a harrowing choice: the security of breathing while being isolated from her children and partner, or being there for her family while risking her life.

Challenges with Family Supports

While adjusting to traumatic life changes in rehab, Fatima was determined to return home. She was initially told that policies and regulations did not permit her to do so. To comply, she relies on her family to provide support, a situation that is extremely tenuous. For example, her husband wakes up for work at four in the morning, and has turn her throughout the evening to prevent pressure sores, as well as ensure that her ventilator is operational. She elaborates:

I am so tired most of the time because of no sleep at night. [As a result] I am not able to give my best the next day thus my children suffer. [As well], I sometimes call out on them at night. This situation is very compromising and unfair on my loved ones - I am beginning to see their frustration with my needs.

As we can see, Fatima has to contend with reduced energy and is unable to fully participate in family life as a result. But fear of isolating loved ones has dire consequences for her health, insofar as she is reticent of voicing some needs less she be perceived as burdensome by those on whom she depends.

Even though her family loves and strives to support her, they cannot consistently provide the security she needs: once when her ventilator cord came loose from her machine, her young son found her, plugged the cord back in, and saved his mother’s life.

Challenges Accessing Supports Outside of Family

Fatima and her family need integrated, around the clock ventilator supports. She writes:

I am very surprised why there is no exception for chronically ventilated disabled persons in our healthcare system – we are faced with the very real possibility of death every minute that we are left alone.

She has done all that she can to get supports. Yet Fatima does not have sufficient attendant hours available to meet her needs, especially in the evening.

Other barriers include:

•At present, she receives only six hours a day of attendant services through public agencies and wait times for further attendant service supports are extensive;

•Her family cannot afford to pay out of pocket, and they are left – frantically at times – doing their best to fill the gaps; and

•Private insurance benefits are limited as only mobility aids and tracheotomy supplies are covered.

Fatima had hopes for direct funding, but found there are currently over four hundred people on the waiting list ahead of her when she applied. Without significant improvements to the program as it is currently designed, she is unlikely to get the support in the timely fashion she and her family needs.

At the end of her interview, Fatima offered this warning: I think I am beginning to give up and so is my family.

Opportunity for Change

Without an integrated, community-based respiration strategy that includes ventilator support, Fatima’s only option to breathe securely is to move into a Long Term Care facility. As noted above, this would be unbearable for her and her family while resulting in unnecessary expenditures to the system.

Such developments should not – and need not – continue. With the implementation of such a strategy, the Province can not only save costs in the amount of $5 million a year (please see attached documents), and can also meet the equally sound policy objective of delivering consistent, community-based, client-tailored services.

In conclusion, the following is respectfully submitted:

CPA Ontario asks that MOHLTC identify this as an immediate priority and direct the Critical Care Secretariat to work with our interdisciplinary team to renovate, fund, and implement an improved, expanded community-based respiratory support program for Ontarians who require ventilator assistance.

Fatima and her family – and all Ontarians that require such support – deserve nothing less.