Imagine your spouse was admitted to the intensive care unit on a ventilator – the result of a serious stroke. You've gone home to get a bit of sleep. Suddenly, the phone rings at two in the morning. The call is about a relatively minor issue, but your first thought is that your spouse has died. You're too stressed to go back to sleep. There has been at least some recognition that partners of people with dementia are under constant stress. But the toll of being the spouse of a patient who is critically ill has not been well recognized.
According to one study, when a patient has a critical illness, within one year, the partner has a 3.7 per cent chance of dying. It may not seem like a high figure, but in relative terms, it works out to the care giving spouse being 50 per cent more likely to die. The spouse has a 67 per cent chance of having symptoms of being depressed, and a 16 per cent chance that the symptoms turn into full-blown depression. A 2016 study from Germany found that partners of patients on a ventilator in the ICU for months are at risk of having posttraumatic stress symptoms. And of course, the significant other may have his or her own health issues the get neglected during the spouse's acute illness.
I'm thinking of a woman I'll call Mary. She's in her early 80s. Her husband is 90, has mild dementia and is in the early stages of Parkinson's disease. That caused him to lose his balance and fall, hitting his head. Now, he has a blood clot that's pressing on his brain. A bout of flu has caused the man to drink fewer fluids, which makes him dehydrated, further increasing the risk of falling. Mary sees me blowing past her in the hallway. I'm in too much of a hurry to sit down and talk with her. If I'm referring her husband to the ICU doctors, or if I'm trying to line up resources to help Mary look after him at home, there's a good chance I haven't stopped to realize just how stressful all of this is for her.
Some partners deny their own needs.
I saw that close up with my own father; he spent 15 years caring for my mum with Alzheimer's disease. Six months after she went to a long term care facility, my dad had his first heart attack. A study found that partners who experience strain being there for a loved one are more likely to die than those who experience less strain. As Ken Flegel said in his editorial in CMAJ, "all too often, we simply assume the health of the caregiver." Health care professionals seldom acknowledge the stress that partners undergo when a spouse is acutely ill. Maybe we don't want to acknowledge a problem we can't fix. Doctors expect spouses to manage an acutely ill loved one – forgetting they may have illnesses that make them increasingly frail.
You can't prevent a significant other from feeling stress when their spouse is hospitalized with a serious illness. But Ken Flegel wonders if the impact of stress can be minimized. The first step is to say explicitly how important the partner is to the patient's well being. It's important to empathize with the significant other and to acknowledge that stress is a problem. It's important to allow space for partners to talk about the stress, the despair and even the anger they feel.
Encouraging significant others to look after their own health needs is also important. There are studies on caregiver stress, but little on now to address that stress. Studies are underway, but we need to move ahead on this a lot faster.
Dr. Brian Goldman is an emergency physician and host of White Coat Black Art.