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.
Blurred lines
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
“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.
The comments section is closed.
why are there no doctors in Ottawa ontario who deal specifically with with complicated grief.
I think this is absolutely terrible.
No, people are not getting the support they need, and that is an understatement.
Compassionate leave benefits, bereavement workshops? For Pete’s sake, patients are getting kicked out of palliative care if they don’t die in the time expected. I know this from experience, and it’s not hard to validate, however, it seems easy, maybe preferable to ignore these days. Relatives are intimidated and placed in conflict with physicians who want to hasten death in order to free up beds, for the sake of cost effectiveness. There is absolutely no doubt about these conditions and I’m not so sure that loss of a child is greater, or more deserving of decent care, than someone’s mother, lover or spouse of 60 years, or for that matter, one’s own impending death. I don’t think we can make assumptions about the bottomless depths of grief when a dear one dies, we cannot presume to measure it. We cannot ration medical care based on an arbitrary value of one’s loss. (Although to be sure, in my experience the loss of a child tends to deeply touch more people, is more poignant, and is a particularly cruel trauma for parents ) Margaret deMello, MSW, Vancouver
Pressure is placed on terminally ill, vulnerable patients and distressed caregivers/families to artificially hasten a loved one’s death…instead of using the time they have to prepare and grieve. We are also moving , well we now have in place a medical system that is more like American medicine, than Canadians’ vision of Medicare.
Margaret,
Good comments.
Exactly, even ones own impending death. We will all be there one day, We will grieve our own illnesses, loss of existence, we will grieve, knowing loved ones left will grieve.
I have a huge concern with the DSM to begin with but supposedly we are not allowed to grieve in certain ways or length of time. That inclusion and many others are actually good because the DSM is looking a bit like the funny papers.
Grief is something that every animal experiences and it can take some to the great depth. It should not be seen as illness, but rather the sufferer, we should grieve with them. Never should a grieving person be made to feel that they are grieving beyond a ‘normal’ grief.
It should not be ‘treated’ from a psychological standpoint, but rather a village of caring people.
It would be great if hospitals had volunteers who have no experience or ‘training’, nor a phd, but rather simply a good heart, simply to allow the grieving.
We make things so complicated by all the ‘taught’ mechanisms of behaviours (how we should act) what we should say, and judging the grieving.
In my grief, I need to be understood in my reality.
When survivors of perceived medical injury complain to the College, or initiate a lawsuit, they are often suffering a grief reaction. I know a senior who had wrong patient surgery and his grief turned into complicated grief. His complicated grief was helped somewhat by my listening to him, repeatedly, as he told his story to me. It was helped by my investigating what had happened to him. He had wrong patient surgery, but at the time of his lawsuit, he didn’t know it. He only knew that before the surgery he was well, and after the surgery he wasn’t, and he blamed the doctor. I blamed the doctor as well, but today, I can see that the doctor could have been experiencing a “complicated grief” at the time of the wrong patient surgery. Quite possibility, he was suffering from sleep deprivation as well.
The CMPA should have given the senior an apology and offered him some compensation. They should have cared for the doctor proactively; ensured he received healing from what appears to me to be complicated grief. Instead, the CMPA got a biased medical expert to defend the care provided.
Today, wrong patient surgery is considered a “never event”. In my opinion, it should not have been defended, and it certainly should not have been successfully defended. The CMPA states that they “Empower better healthcare”, and they learn from cases which are “resolved”. This case was “settled” but it was never “resolved”.
The CMPA intimidated the senior into dropping his lawsuit; that was the settlement. Two years after the “settlement”, the senior put in a complaint to the College. The CMPA had learned that they could successfully defend wrong patient surgery and from this learning, they were able to successfully defend against this gentleman’s complaint. The College completely dismissed this senior’s complaint.
The senior appealed the College decision, but the CMPA successfully defended the College’s decision. The Ombudsman was contacted, but he did not have jurisdiction over the College, just the appeal process, and the process was carried out correctly, therefore there was no justice for the injured patient who had wrong patient surgery.
The CMPA is a powerful organization that protects the reputation of Canadian doctors. I believe Canadian doctors, through their CMPA, causes injured patients Complicated Grief, and I believe this needs to be looked at proactively. Complicated Grief can be proactively prevented with “no-fault” for medical errors. Learning can be done from the error, and further harm to injured patients and additional harm to the doctor and his subsequent patients can be avoided.
RE CMPA
So true. The cavalier and careless attitude of GP’s these days is despicable. True of specialists as well. They seem to be unaccountable. Part of the problem however, are provincial restrictions which limit the doctor patient ratio, and create long waitlists by rationing services through gatekeeping. So there are diagnostic and treatment delays, a crises model, and slipshod ethics, in a big way. This long ago reached crises proportions and still nothing has been resolved.
Dear seniors friend.
I am glad that you were there and stood up to be counted.
Again and again I have a mind boggling question. What makes medical staff so comfortable to wield such power? We know that quests for control are not from a mentally healthy person, so I question the mental health of the health industry itself. It is akin to many organizations that survive because of power. Power for the good is a good thing. But this thing is a festering sore. It is caused by egos that can break easily.
The only way to keep that ego from breaking? Be tougher than the next guy. Have at your arsenal protection to the max.
My rational and insightful side say, this cannot last. People grow, they grow in insightfulness, they lose their fear (cleverly disguised as ‘respect’). Years ago, we had to ‘respect’ all knowing doctors and the law, but it was not respect, it was fear.
I will not fear, and you have to earn my respect. I pay wages, when I pay wages, why am I paying to be stomped on? It’s craziness to take such hidden abuses, and crazy for the colleges to protect bad service.
Poor senior, well if they can’t shut people up, they have other ways. I feel sorry for a lot of medical people and even some at the colleges. They took years of training at a young age and are now stuck in a marriage.
I think many would walk if they could find a half decent paying job. But then, there is the standard of living and it is all just so complex from an emotional point of view.
I just wish the good medical folks had more power, more support. We need them to become the majority.
Thank you for a most timely and thought-provoking article. While there is growing awareness of the stress and strain that family caregivers endure while caring for a loved one who is unwell, not enough attention is paid to the fact that death does not mark the end of the caregiver journey. The grim reality is that caregivers can continue to struggle after the period of caregiving concludes… and, in our highly-fragmented “system” (I use that word loosely), this caregiver distress and grief often goes undetected and therefore untreated. It is long past time that we return to an approach in which the family is the unit of care. Thanks again for raising awareness of this pressing social issue.