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Grant Crosbie's family wasn't expecting a miracle. His wife and children knew he could never recover from Alzheimer's devastating carnage. All they wanted was for him to have a peaceful death in the long-term care facility that had become his final home. That didn't happen. Crosbie died, age 72, on Feb. 9, after a week in distress, gasping for breath and drowning in his own phlegm with his increasingly frantic family begging for medical assistance.

How we die is regularly in the headlines as we await government legislation to be tabled in response to the 2015 Supreme Court of Canada decision legalizing physician-assisted dying. Palliative care gets less attention, but it is what most of us will want at the end of life: drugs to relieve agitation, pain, agonal breathing and other symptoms. Nurses can provide soothing medications, but only after doctors have issued prescriptions, often with increasing dosages. But as the Crosbie family discovered, doctors are few and far between in long-term care facilities, especially on weekends. Their experience is a cautionary tale.

A physically active, personable advertising executive, Crosbie was diagnosed in his late 60s with a rapidly progressing form of Alzheimer's disease. He quickly lost cognition, sentience and independence. In 2014, he spent five months languishing in an acute-care hospital, before a place finally opened for him in Sheridan Villa in Mississauga, one of the few special behavioural units for disruptive dementia patients in Metro Toronto. (I wrote about his wife Karen Harrington's struggle to find appropriate care for Crosbie in The Globe in September, 2015.)

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By the beginning of this year, Crosbie was calmer and more content, although his health was declining rapidly. He could no longer walk, talk or feed himself, and was having trouble swallowing even puréed food. As her husband's power of attorney for health, Harrington had already decided that she would resist heroic efforts, including antibiotics, to prolong her husband's life. She'd also been assured that he could receive palliative care. Traditionally, that includes drugs to ease pain, distress and other end of life symptoms, even if it hastens death.

"The staff in the LTC facility where Grant resided were good, caring people," Harrington told me. I visited him at Sheridan Villa and was also impressed by the quality of the care he was receiving. That perception began to change when Harrington and her sister-in-law, a retired nurse, both of them regular visitors, noticed that Crosbie was breathing irregularly on Tuesday, Feb. 2.

"We counted up to 20 seconds between breaths," Harrington said. She reported the situation to a nurse who set up an appointment with a doctor for the following morning. A series of calamities ensued: The doctor had a family emergency which delayed the consultation for two days; he ordered an X-ray but a fire alarm meant the technician couldn't enter the facility and the test was rescheduled from Friday to Monday. Crosbie's condition worsened. Harrington was woken at home just before midnight on Saturday by a staff person asking for permission to transfer Crosbie to hospital.

Harrington, knowing her husband became disoriented and extremely agitated in new situations, and fearing he might not be seen quickly in a crowded emergency department, refused the transfer and rushed to his bedside. Even so, he waited 14 hours for a morphine injection, and continued to struggle for two more days while his family begged for an increase in the frequency and dosage of the medication. Finally, another doctor came to see Crosbie. "He saw how distressed Grant was," said Harrington. "We talked about what was happening to him and we agreed to remove the oxygen mask and increase the morphine to ease his pain and calm his agonal breathing." A few hours later, her husband died.

"They wanted to help us and to help Grant, but they did not seem to have the palliative-care training and necessary skills to enable a peaceful end of life," Harrington told me later. Still distraught by the memory of her husband's painful death, she "feels there needs to be more palliative-care training for staff and caregivers."

About 15 per cent of all deaths in Ontario occur in long-term care facilities. With a rapidly aging population and soaring dementia figures, those numbers are likely to rise despite our hopes of aging and dying at home. Yet none of the $75-million recently pledged by the Ontario government to bolster end-of-life care across the province is earmarked for long-term care facilities. Instead, the money is going to support hospices, caregivers and health-care practitioners who are providing palliative care in patients' homes, according to MPP John Fraser, parliamentary assistant to Eric Hoskins, Minister of Health and Long Term Care.

That focus leaves some of our most vulnerable patients, including those like Crosbie who are suffering from dementia, in extremis. The lack of adequate medical support on site means that many frail, elderly and cognitively impaired residents who develop urinary tract infections, breathing problems or other end-of-life issues are routinely shipped by ambulance to crowded hospital emergency wards.

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"We don't always do a good job of helping families understand that irreversible dementia is a terminal condition," said Mary Schulz, director of education for the Alzheimer Society of Canada. She points out that palliative care "is a patient-centred approach to care," not an end in itself. She believes it is "of benefit to anybody living with dementia," but it shouldn't start when "death is imminent." Instead, the approach needs to begin long before in patient-centred care and in discussions with family and caregivers about pain management, feeding tubes, transfers to hospitals, do-not-resuscitate requests and lots of other end-of-life wishes and expectations. The Society has just released an online resource offering general advice to help caregivers understand and navigate some of these issues.

Meanwhile, the information gap along with the need for specific funding for palliative hospice care in long-term care facilities puts the onus on all of us to look beyond safety, nutrition and programming options when we choose nursing homes for our loved ones (and ourselves). We need to ask explicit questions about end-of-life policies and practices, including the prescribing of narcotics and other drugs for dying residents. Does the institution have a partnership with a local hospice or palliative-care program? Harrington, a loving and attentive caregiver, thought she had asked all the right questions. Now she knows it wasn't enough. That's why she agreed to talk about the sad final chapter in her husband's life.

Sandra Martin's book, A Good Death: Making the Most of our Final Choices, will be published this month by Harper Collins Canada.

Follow Sandra Martin on Twitter: @semartin71

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