Dying Ontario patients caught in home care supply shortage

Lise Lacroix was nearing the end of her life in late September when an ongoing cough worsened and she began struggling to breathe.

The Ottawa woman was at home, in her own room, where she wanted to be. That was a promise her family was determined to keep. “I would do everything in my power,” said her daughter, Monique.

But the growing discomfort and shortness of breath were exhausting for Lacroix and alarming for the family members who were caring for her.

Lacroix’s palliative-care physician ordered a piece of equipment called a nebulizer that could deliver medicine in a mist form to ease her difficulty breathing — sometimes akin to a feeling of drowning for patients — and to help her rest.

But that didn’t happen.

Lacroix, a mother of four and a pillar of her close family, died on Oct. 6, before all the parts for the nebulizer arrived at her home and nearly a week after it was urgently ordered. The equipment could have helped her during some of her toughest final days, doctors say.

The 81-year-old, like other patients across Ontario, became collateral damage in a medical supply system failure that has left some patients waiting precious days for urgently needed equipment, medicine and other items.

And, despite reassurances from Ontario officials that the situation is being fixed, issues continue, says Dr. Paul Hacker, a community palliative-care doctor who treated Lacroix and is lead physician with Ottawa’s Community Palliative Care Associates. Just days ago, an end-of-life brain cancer patient receiving palliative care in his Ottawa home was left waiting more than 16 hours for morphine and other medication to ease his pain. The order, which should have taken four hours or less, was delayed.

Prior to a recent change in the way home-care medical supplies are ordered and distributed in Ontario, it would have taken 24 to 48 hours for a nebulizer to be delivered to a patient’s home, says Dr. Claire Dyason, one of the community palliative-care doctors who looked after Lacroix at home and spokesperson for the Community Palliative Network of Ottawa. The machine was ordered for Lacroix on Sept. 30, with the expectation that it would arrive at the family’s west end Ottawa home in a day or two at most. On Oct. 3, it still hadn’t arrived and Lacroix’s daughter Monique reported that her mother had been up most of the night, coughing and struggling.

“Struggling to breathe, when someone can’t speak because they are so short of breath or trying to get up and go to the bathroom takes it out of them, is an incredibly distressing symptom to witness. It is a really hard thing for family members to watch someone go through,” Dyason said.

The next day, a box arrived at the family’s door containing the nebulizer machine and necessary medication, but not the mask and tubes required to make it work. Monique was told they were on back order. The remaining equipment arrived on Oct. 7, a day after Lacroix’s death.

“I could not believe it,” Monique said. “The whole point was for Mom to get a good sleep.”

Lacroix’s husband, Marcel, recalled family members having to partially pick up his wife to make it easier for her to breathe.

“We had to try to help her breathe.”

In the last few days before her death, medication and repositioning appeared to make her more comfortable, Monique said.

While health professionals and family members cared for Lacroix, a co-ordinator was frantically trying to track down the equipment needed to get the nebulizer working.

Weeks later, the situation at Ontario Health atHome, which co-ordinates home and community-based care across the province, continues to cause unnecessary suffering to some patients and moral injury for health care workers, palliative-care physicians say.

Recently, an emergency order of medication to help make a dying cancer patient more comfortable was delayed, leading to a difficult night for the patient and upset family members. That medication should have been delivered within four hours of being ordered at 5 p.m., Hacker said. Instead, it arrived the following morning, 16-18 hours after it had been ordered.

“Those were really tough hours,” Hacker said. “The patient was in pain. This obviously was an emergency and we wanted to address it, but we really couldn’t.”

Last month, amid reports of the delays and shortages from around Ontario, Health Minister Sylvia Jones declared the situation unacceptable.

“We have been working with Ontario Health atHome to ensure that no patients, no patients’ families, no clinicians are impacted by a logistics issue. I want to assure the people of Ontario that we have been on this issue since we first learned that there were shortages … We know this is unacceptable and we are not going to allow this to continue.”

Spokesperson Hannah Jensen said Jones had directed the chair and CEO of Ontario Health atHome to utilize “whatever means and resources necessary to resolve this situation as quickly as possible. Once the supply has been received by those who need them, there will be time to reflect on why this happened and ensure it never happens again.”

Ontario Health atHome has set up a 24/7 phone line for patients, families and health providers. The calls are answered by patient care team members who work with vendors to get them the supplies they need as quickly as possible, spokesperson Adele Small said.

“We understand that the current medical supplies delivery issues have caused distress to our patients and their families,” she said. Small said she would not comment on individual cases. The provincial government has offered to pay for any supplies patients have ordered online because they weren’t available on time from Ontario Health atHome.

The problems began in September after Ontario Health atHome launched new contracts for medical equipment and supplies because the old ones were expiring.

“It presented an opportunity to provide better access to standardized high-quality products across the province for patients,” Small said. “Multiple vendors were awarded contracts as a result of a competitive procurement process in alignment with government directives.”

But physicians who rely on the equipment and supplies for their patients say the rollout of the new system has been flawed from the beginning.

For one thing, it took those ordering supplies for patients by surprise. There was no consultation, Dyason said, nor notice that the way of ordering supplies, and catalogue numbers, had changed. That left people scrambling to try to find needed supplies and sometimes encountering shortages and back orders.

Further, Dyason said, the changes initially included a provision that medications had to be ordered by 1 p.m. for delivery the same day. For health providers — particularly those working with dying patients — that time frame was untenable and would leave patients, whose conditions could change rapidly, suffering for hours. After an outcry, the deadline was pushed back to 5 p.m., doctors say.

Dyason said the situation had been difficult for some patients, although many potential issues had been managed. But it had also been morally distressing for palliative physicians and other care providers because they were unable to provide the care they knew their patients urgently needed.

“There is significant moral distress from not being able to provide the care that you know you can because of lack of access to medications or equipment. That is hugely distressing,” Dyason said. That stress continues in the form of worries about what might come next.

She said there needed to be a review of the way the changes to the system happened before any future reforms. Key is the lack of consultation.

“There is nobody who is bringing a doctor’s or nurse’s or patient’s lens to these decisions,” Dyason said. “There have been lots of things that have come out of the blue, but nothing to this extent. That is something that needs to change.

“There has to be a better way to roll out something like that. Communication has been non-existent.”

Hacker and Dyason say some of the initial problems have begun to settle down — those who are in charge of ordering supplies now know the catalogue numbers, for one thing — but the problems have not completely gone away to the detriment of patients.

When Dyason returned to Lacroix’s home after her death, one of the first things she did was to apologize to members of her family.