Palliative care has been lacking for decades in long-term care

Posted: July 17, 2020

(July 16, 2020)

Dr. Amit Arya is a palliative care physician and a board member of the Ontario Health Coalition

By: Amit Arya, Policy Options

When the Canadian Armed Forces were called in to help Ontario’s nursing homes during the COVID-19 pandemic, they were shocked by the care and treatment of our nation’s seniors. Their report shared details that Ontario Premier Doug Ford referred to as gut-wrenching. Findings included:

“Poor palliative care standards, including no mouth or eye care supplies for dying residents.”

“Palliative care orders are not charted, are unknown to staff and therefore not often observed and residents’ documents are out of date.”

“Lack of pain treatment, including a patient with a fractured hip and inadequate palliation.”

What may also be shocking is that these findings are not unique to the pandemic. Even on a good day, palliative care is often utterly inadequate in nursing homes, and this needs to change.

In Ontario, the average resident of a nursing home dies within 18 months. For many of us, these are the places we will go to die, yet palliative care is not something people in these homes predictably receive. In fact, only six percent of residents in a nursing home have a record of receiving palliative care in the last year of life, according to a 2018 study by the Canadian Institute for Health Information (CIHI).

As Canada discusses reforming our nursing homes in the wake of COVID-19, it is important that we recognize the need for early, integrated palliative care. What this means is that suffering is monitored and then addressed in a timely fashion when required, not just in the last days or weeks. It means that we attend to the physical and emotional well-being of patients and their families while continuing to learn about what quality of life means for them. This care happens while patients are being treated for their underlying illnesses and continues after they or their doctors decide that treatment is no longer helpful, desirable or necessary.

Palliative care does not hasten death, as some people believe. It improves the quality of life that remains. And it should not be reserved for the last desperate hours or days, because suffering usually starts much earlier. Importantly, it can be provided alongside other treatments to sustain life, if appropriate.

Palliative care is built on frequent, deep conversations between health workers, patients and their family members. The goals of these conversations are twofold: to ensure that patients and families understand the medical situation and the healthcare team understands what is important to the patient in the time that is left. These essential discussions take time and trained health workers – something in short supply in the nursing home system.

Palliative care does not hasten death, as some people believe. It improves the quality of life that remains.

There is a huge staffing discrepancy that exists between institutions. In my experience as a palliative care physician, those dying in hospice have a nurse who cares for four other patients. But those approaching end-of-life in nursing homes may have a nurse who cares for about 30 other patients in the day, or even 60 other patients at night. Imagine.

For decades, our nursing home system has not been meeting the needs of our seniors. Even worse, as the population has aged, resources haven’t grown to meet the demand. People in nursing homes are now much sicker and more medically “complex.”  Often they have diseases with no cure, such as dementia or heart failure, lung disease or kidney problems.

Nurses and doctors in these homes are not always trained to recognize when a patient could benefit from palliative care to ease symptoms such as breathlessness, pain or agitation. Even if they are, they do not necessarily have the resources, time or knowledge to help. Too frequently, when a patient’s underlying condition predictably worsens, they are sent to the emergency department – putting them at risk for more confusion (called “delirium”) due to the change in environment and caregivers, and quicker loss of muscle mass because no one gets them out of bed. Improving nursing home care may allow more seniors to receive the care in the place they actually consider their home.

Effective and timely palliative care can help to recognize and treat pain in someone with dementia, which can decrease agitation and improve quality of life. For example, for a person with advanced lung disease, physicians can prescribe steroids and low-dose opioids to relieve shortness of breath, and antibiotics to treat predictable infections in the nursing home. For someone in the last hours or days, treatments may focus on ensuring comfort for the patient, and emotional support for their grieving loved ones.

And palliative care doesn’t just involve medication. It can include companionship for a person who is isolated, to give them hope and purpose in life. It can mean a receptive ear or spiritual counsel for family members, to address any feelings of guilt, anxiety or anger that they might have.

Palliative care allows people to live the best life possible until the end.

But all of this requires qualified staff who have sufficient time to evaluate the health of patients, meet with their families regularly, and adjust treatments as a disease progresses. It means knowing when to intervene and just as importantly, knowing when to stop.

So what needs to be done?

• Culture change. In many nursing homes, palliative care is equated with end-of-life care. But effective “21st century” palliative care means treating symptoms in a timely way, maintaining function and wellbeing for as long as possible, and ensuring treatments flow from ongoing discussions to understand what matters most for the patient.
• More staff. Staffing ratios need to improve in nursing homes for all front-line health workers. This will help them monitor symptoms closely, deliver appropriate treatment and allow the residents to personalize their daily routines and avoid monotony. Workers in nursing homes deserve the same pay as their counterparts in hospitals.  Having more staff also permits a team approach including physicians, nurse practitioners, nurses, personal support workers, physiotherapists, occupational therapists, social workers, activation therapists (professionals who plan recreational activities such as movies and bingo), and spiritual care.
• Education and training standards. The care in nursing homes is highly specialized. We wouldn’t allow health workers to work on the labour and delivery ward without training in obstetrics, nor would we allow someone unable to perform CPR to work in an emergency room. How is it acceptable that nursing home staff are not required to have training and skill in the basics of palliative care?  You may be surprised to hear that many medical students and residents – even those moving into careers in family medicine or geriatrics – do not have any required rotations in palliative care.
• Access to palliative care specialists. Although there will not be enough palliative care specialists in the near future to directly see all nursing home residents, specialists need to be more available to provide advice when a patient or family has concerns that are not resolved with initial attempts by the nursing home staff.
• Virtual care. Due to COVID-19, some nursing homes are now using virtual care to provide additional support from hospital-based specialists. This improves access and needs to continue beyond the pandemic.
• Accurate prognosis. When predicting life expectancy, even the best doctors and nurses can often be wrong. Very soon, cutting edge tools developed from “big data” could help health workers, nursing home residents and their families make better decisions and avoid overtreatment.
• Frequent conversations about current and future treatment. It is important for nursing home residents – along with their loved ones – to understand their condition well in order to choose the right treatments for them. Nursing home staff should offer treatments that relieve suffering, and if appropriate, treatments that prolong life without greatly sacrificing quality of life. But having these discussions, often centred around meeting with family members, requires skill, training and time.

Long-term care needs to fall under the Canada Health Act. To ensure equitable access and high-quality care, our federal government must implement a national long-term care strategy.  This will ensure standards don’t vary based on where one lives, and include measurements to assess the quality of care in nursing homes. Important metrics include monitoring of pain and symptoms, advance care planning and goals of care discussions, psychological and emotional well-being of patients and their families, hospital transfers and place of death.

And if we get the model of palliative care right in nursing homes, we can learn to improve care for patients in other settings, too, such as homes and retirement facilities. As our population ages, more people will develop incurable diseases like dementia and require skilled care, including palliative care.

Our death-denying culture tends to push people who are aging and dying out of sight and out of mind. COVID-19 has had a devastating impact on long-term care residents and their families, and we’re seeing the tragic effects of this indifference. We must make sure those in the final phase of their lives have the best palliative care we know how to deliver. Reform and redesign of Canada’s long-term care homes need to include early, integrated palliative care so we can live the best lives we can – with the least suffering – until the end.

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