Grief a lonely place in the health care system
When Peter Anderson’s wife died of breast cancer in September, his “cancer coach” at the Ottawa Regional Cancer Foundation’s Maplesoft Centre connected him with a psychologist who specializes in grief and helped him transition from a caregiver support group to a bereavement support group.
“I felt, in my own case, that I was adequately supported,” Anderson* says. “The bigger challenge, to my mind, was my kids.”
His daughter was about to enter middle school and his son was about to graduate high school when it became clear his wife had little time left. His son became listless and depressed to the point he couldn’t function.
When their mother died in September, just as both children were entering new schools and new phases in life, there were few resources that seemed appropriate to support them through their grief.
“There does seem to be various resources out there, but they present themselves as a maze at the moment when you’ve just lost their mother or your wife, and you’re dealing with your grief, but you’re also dealing with the estate, the insurance, the employer. All sort of things. It’s not easy to navigate, for three people trying to find their way to the kind of psychological counselling or support that they might need. There’s no straightforward conduit to that,” he says.
At a time when there’s more emphasis on end-of-life care and attempts to support death at home, as well as new challenges presented by medically assisted death, the Anderson family’s experience highlights the patchwork services available to those left behind.
“We talk about normalizing the conversation about death. Well, this is part of that,” says Sharon Baxter, Executive Director of the Canadian Hospice Palliative Care Association. “What families need are other families to talk to, social workers, spiritual care counsellors. They’re not hugely costly, however, they’re not funded at all.”
No one size fits all
Studies show grief can trigger a range of physiological symptoms, including pain, headaches, dizziness, fatigue, loss of sleep or appetite or trouble with digestion, as well as myriad psychological reactions, such as depression or fearfulness. In some cases, it can make mourners more susceptible to illness.
If the death is unexpected, accidental, a homicide or suicide, there may also be residual feelings of guilt or anger or even trauma.
For most, the intensity of grief diminishes over time. Finding support in family and friends, or in community bereavement groups where they’re able to speak with others going through a similar type of grief, can be helpful.
“The majority of people will manage and adjust to the death of their loved one without professional help. But between 10 and 20 percent of people have a difficult kind of bereavement that may require professional intervention,” says Sue Morris, Director of Bereavement Services at the Dana-Farber/Brigham & Women’s Cancer Center in Boston.
“Grief is very messy business. No one size fits all. People are going to cope with their bereavement based on their personality, whether they’ve had other losses, the nature of the relationship with the deceased and the way the person died,” she says.
Those looking for rigorous research pointing to the critical actions that will help ease grief may be disappointed.
“There are so many different variables that factor into a person’s grief and many different types of support available provided by an array of individuals and organizations, making comparisons difficult,” Morris says. What can help, she says, is trying to get back into routines, looking after their own health and resuming activities that “normally you would find nourishing or nurturing,” such as hobbies or exercise or being with friends and family.
“In our society, somebody dies and life goes on and you don’t always process the feelings left over. So what would be helpful is having an opportunity to talk through the death, to share any unresolved feelings of anger, guilt and fear and to have someone who’s a supportive listener,” says Mel Borins, an associate professor in the department of family medicine at the University of Toronto, who co-authored an educational module offering an approach for family physicians treating patients undergoing grief and loss.
One of the struggles that grieving family members can face is feeling cut adrift when their loved one dies, especially after a lengthy illness involving intense care within the health care system. Bereaved family members can feel deserted when that circle of care suddenly closes.
“It’s sort of like the medical profession’s job is over for you and you’re kind of just left on your own,” says Aruna Ogale, Executive Director of Bereaved Families of Ontario. “It’s almost sometimes a rude awakening. Not only has your loved one died, you feel abandoned.”
Health care workers can feel a similar sense of confusion about where care ends as well. Jonathan Ailon, a palliative care physician at St. Michael’s Hospital, says he’d like to be more involved with grieving families, but the health system’s structure means he’s only funded to see patients with life limiting illnesses, and only by referral.
“For the vast majority of families, I’ll either write them something personally or give them a call, just to check up, with the option for future calls,” he says. “That’s kind of my balance. It doesn’t require any hospital support or infrastructure and I don’t need a referral to do that.”
St. Michael’s has adapted an existing bereavement assessment tool of 15 questions focusing on a family member’s psychological state, social circle and the circumstances around the death. Staff use it to evaluate the family of patients on the palliative care service, looking for any red flags that might point to an elevated risk of developing complicated grief.
“Complicated grief” is emotional, physical or social dysfunction that can make sufferers feel stuck within their grief. Many find it extremely debilitating and it’s been associated with both suicidal thoughts and substance abuse.
“When you have somebody who’s not coping with complex grief, they can run into their own significant health issues,” says Sheila Deans-Buchan, a nurse practitioner in the palliative care unit at St. Michael’s Hospital in Toronto.
“If we’re not helping to screen for these high risks now for these individuals, we’re really doing them a disservice because, down the road, they’re going to be the ones who are ending up in an acute care bed, needing increased healthcare services. So if we want to be doing preventative primary care, then really, this is part of that preventative care.”
Like many hospitals, St. Michael’s sends grieving families home with a brochure detailing various community bereavement resources. But Ailon acknowledges that because there’s no mechanism for feedback, it’s hard to know how useful those programs are, or whether mourners even took advantage of them.
“People who work in the health care system acknowledge there’s a huge gap,” Baxter says. Her organization will be announcing a Bereavement Awareness day in November, to help draw attention to the need for more coordination and funding for grief support.
“It’s easy to say that at the point of a patient’s death is where care ends. That’s a clean line of delineation on what gets funded. It gets blurrier when you get past the patient’s death. What’s needed, and for how long?”
Baxter would like to see compassionate care benefits extended to two weeks beyond the date of death. Currently, caregivers can qualify for up to 26 weeks of Employment Insurance benefits, but they come to an end the day the patient dies.
Ailon says standardized approaches to bereavement would help, including introducing ways to notify physicians and other care teams about the death and facilitating means where they can communicate with family members.
Ogale would like to see more bereavement workshops happening in hospitals and other health care settings.
Most people need help preparing – thinking through things they’re going to have to do after the death, such as who will take them home from the hospital or developing a list of people to be called and informed about the death.
“We really need to start thinking about those left behind,” Ogale says. “Yes, we want to make the dying person comfortable, make their passing comfortable, but think about the person who is going to have to go on alone. What do you have in place for them?”
*Name has been changed to protect the privacy of the children.