Stroke patients have different needs than most others in the health system, including when it comes to end-of-life care.

The staff of the neurology unit at Royal University Hospital (RUH) understand these different needs and have worked together to create a package of information for patients, physicians and families.

For years, when stroke patients needed palliative care, providers attempted to get them into the palliative care beds at St. Paul’s Hospital. This required a number of consultations, and due to the limited number of beds, some patients were not able to get beds before their deaths. Palliative Care and Neurology made an organized effort to provide qualify end-of-life services specific to stroke patients but this came with its own challenges.

“The biggest thing I was seeing here was distress of family members when it came to the care of their loved one because the trajectory for patients from having a stroke to dying can take quite a while,” explained Shelley Jolly, a palliative care coordinator at Royal University Hospital. “It’s hard on the family. We needed to make it clear which patients were palliative – needing symptom control and comfort– so that the entire care team and the family were on the same page.”

As a solution, the neurology unit came up with a package of information for healthcare providers. The package includes order sets to guide physicians and standardize care for palliative stroke patients, so that their treatment remains consistent from doctor to doctor. The package also includes a care plan for nurses, which changes the focus of care from providing medical interventions to providing comfort, and makes it clear what the unique needs of palliative stroke patient are and what staff can do for them.

Information for patients and families

Information for patients and families

The information for families in the package explains their loved one’s care plan, the team involved in their loved one’s care, and what symptoms they can expect while their loved one is dying. There’s also information about self-care for family members to ensure that they are taking time to get some rest themselves without feeling guilty about it.

Having this information so readily available has made the entire journey a smoother for patients, their families and staff.

“It allows for best practices in palliative care to happen on this unit, with these patients,” said Anne Saulnier, a clinical nurse educator on the unit.

“It’s our belief that palliative care can happen where the patient is, regardless of which unit they are in, or what their disease is,” said Ruth Whelan, stroke services clinical nurse specialist.

Stroke is the third leading cause of death in Canada, but resources for stroke patients are limited when compared to those for cancer, chronic obstructive pulmonary disease and other chronic diseases. This lack of resources may be due in part to the sudden onset of stroke.

“With other diseases like cancer, a patient’s decline is somewhat predictable over time, and this allows the patient and family to prepare. There are more predictable symptoms,” explained Ashley Trites, a registered nurse at RUH.

“Care for a stroke patient often starts with a tragic event,” said Jolly. “It’s extremely stressful for the family, because of the big shock involved. Usually, because of how suddenly it all happened, there has often been no decision-making about end-of-life care.”

“With a palliative stroke patient, there’s an immediate or very rapid decline due to the disease itself,” said Whelan. “Sometimes the dying process lasts weeks. Our goal is to provide the best quality of life even in the experience of dying.”

“It’s often very acute grieving for the family,” said Jolly.

The information pamphlets for families are part of a patient kit that is given to the families of all patients on the unit. Filled with snacks, a blanket, an alarm clock and a nightlight, along with other necessities, the kits are meant to help families while they stay at the hospital with their loved one.

Kit

Patient kit

“The team helped put the information package and patient kit together and it’s beautiful,” said Jolly. “The reason we were able to put it together so quickly was because the staff were so willing to get up and do it. There’s a great team on the unit.”

This entire information package is the only one in Canada that the team knows of – a literature review hasn’t identified anything like it, but the staff isn’t keeping the information for themselves. They’ve already shared it with two other health regions.

They’re also looking at ways to prove that as a tool, this package of information works.

“We’re just starting a grassroots look at how we can validate the improvement this makes, so when we disseminate it, we can tell those receiving it that it works for patients, families and staff, and we have numbers to back it up,” explained Ruth.

So far, the anecdotal evidence they have gathered has been positive.

“The staff love it, and the families say it’s more comforting to have the information. That’s what we’re striving for. It’s not a happy time for families, and if we can lessen their distress, then we’ve succeeded,” said Jodi Copeland, clinical coordinator.

“It allows the puzzle pieces to fit when it comes to care,” said Saulnier.

The physicians are giving it excellent reviews, as well.

“It’s great,” said Dr. Gary Hunter, who works with many palliative stroke patients, along with Dr. Andrea Johnson. “It’s really helpful in delivering a consistent approach, and helps us meet the ultimate goal of providing comfort to these patients and their families. The materials also help inform resident physicians about the approach to take – it’s a consistency that was missing before.”