Refusal to face reality of death leads to increased use of aggressive, futile health-care efforts
Seriously ill, hospitalized Canadians are increasingly receiving aggressive, invasive and futile care at end of life because patients and families cannot accept the grim reality that they are dying, according to more than 1,200 doctors and nurses surveyed from across the country.
Unrealistic expectations about life-prolonging treatments and disagreements among family members are also preventing crucial discussions around the use — or not — of CPR, artificial ventilators, tube-feeding and other interventions from happening, according to the survey.
“If we don’t have these conversations, there is a chance of patients receiving care that in the end is going to inflict more suffering than help,” said Dr. John You, lead author of the study and an associate professor of medicine and clinical epidemiology and biostatistics with McMaster University’s Michael G. DeGroote School of Medicine in Hamilton.
“We need to normalize conversations about death and dying so that people can be more comfortable having advance care planning discussions within families before there’s a crisis.”
The study, published Monday in JAMA Internal Medicine, involved a survey of 1,256 staff doctors, residents and nurses working in medical teaching units at 13 hospitals in British Columbia, Alberta, Ontario, Quebec and Newfoundland and Labrador between September 2012 and March 2013.
The questionnaire began with a vignette of a 70-year-old patient with a flare up of chronic obstructive pulmonary disease, or COPD. The man is housebound, on oxygen, and needs others to help provide almost all care for him.
Respondents were asked to rate the most important barriers that would prevent them from engaging the patient or his family in end-of-life discussions around goals of care — particularly around the use of life-sustaining, or death-prolonging, treatments.
The three biggest barriers identified by all three groups were difficulty accepting a loved one’s poor prognosis, difficulty understanding the limitations and risks of life-sustaining interventions and lack of agreement among family members about goals of care.
Fear of being sued was the least important barrier.
The survey builds on an earlier study by You and his colleagues from the Canadian Researchers at End-of-Life Network (CARENET) who interviewed elderly patients in a dozen Canadian hospitals who were at high risk of dying in the next six months.
Only about half had discussed their wishes around end-of-life care with a member of their health-care team. Only a minority wanted CPR. But when the researchers looked at the actual “code status” on their charts, many were “full code” — meaning CPR and every other possible measure would be used to try to resuscitate them.
You said the new survey highlights the “sometimes high, but understandable levels of anxiety and denial experienced by seriously ill, hospitalized patients and their families.”
But many doctors haven’t been trained how to initiate difficult conversations with patients, how to be honest and open about their prognosis and listen and respond with empathy to their emotional reactions.
“Overall the sense from the clinicians is that patients and families tend to get in the way” of making concrete decisions about a patient’s care plans, You said. “This is what they perceive,” he said.
“But I think it reflects that if patients and families are having a difficult time then one of the solutions clearly has to be that physicians need to be skilled communicators — they need to know how to navigate these sometimes emotional or difficult discussions and be sensitive,” he said.
“They need tools, they need training and they need to be confident in engaging in those discussions and I don’t think many clinicians are that comfortable. So that’s certainly an area where we need more work,” You said.
“We need to discuss these goals of care head on, instead of putting them off, putting them off, which is what tends to happen.”
Refusal to face reality of death leads to increased use of aggressive, futile health-care efforts
So much needless suffering, panic and fear could be alleviated if discussions surrounding death and the processes were not such a taboo topic. It's so beyond time for some really honest, reality based conversations, in families and in society in general.
Seriously ill, hospitalized Canadians are increasingly receiving aggressive, invasive and futile care at end of life because patients and families cannot accept the grim reality that they are dying, according to more than 1,200 doctors and nurses surveyed from across the country.
Unrealistic expectations about life-prolonging treatments and disagreements among family members are also preventing crucial discussions around the use — or not — of CPR, artificial ventilators, tube-feeding and other interventions from happening, according to the survey.
“If we don’t have these conversations, there is a chance of patients receiving care that in the end is going to inflict more suffering than help,” said Dr. John You, lead author of the study and an associate professor of medicine and clinical epidemiology and biostatistics with McMaster University’s Michael G. DeGroote School of Medicine in Hamilton.
“We need to normalize conversations about death and dying so that people can be more comfortable having advance care planning discussions within families before there’s a crisis.”
The study, published Monday in JAMA Internal Medicine, involved a survey of 1,256 staff doctors, residents and nurses working in medical teaching units at 13 hospitals in British Columbia, Alberta, Ontario, Quebec and Newfoundland and Labrador between September 2012 and March 2013.
The questionnaire began with a vignette of a 70-year-old patient with a flare up of chronic obstructive pulmonary disease, or COPD. The man is housebound, on oxygen, and needs others to help provide almost all care for him.
Respondents were asked to rate the most important barriers that would prevent them from engaging the patient or his family in end-of-life discussions around goals of care — particularly around the use of life-sustaining, or death-prolonging, treatments.
The three biggest barriers identified by all three groups were difficulty accepting a loved one’s poor prognosis, difficulty understanding the limitations and risks of life-sustaining interventions and lack of agreement among family members about goals of care.
Fear of being sued was the least important barrier.
The survey builds on an earlier study by You and his colleagues from the Canadian Researchers at End-of-Life Network (CARENET) who interviewed elderly patients in a dozen Canadian hospitals who were at high risk of dying in the next six months.
Only about half had discussed their wishes around end-of-life care with a member of their health-care team. Only a minority wanted CPR. But when the researchers looked at the actual “code status” on their charts, many were “full code” — meaning CPR and every other possible measure would be used to try to resuscitate them.
You said the new survey highlights the “sometimes high, but understandable levels of anxiety and denial experienced by seriously ill, hospitalized patients and their families.”
But many doctors haven’t been trained how to initiate difficult conversations with patients, how to be honest and open about their prognosis and listen and respond with empathy to their emotional reactions.
“Overall the sense from the clinicians is that patients and families tend to get in the way” of making concrete decisions about a patient’s care plans, You said. “This is what they perceive,” he said.
“But I think it reflects that if patients and families are having a difficult time then one of the solutions clearly has to be that physicians need to be skilled communicators — they need to know how to navigate these sometimes emotional or difficult discussions and be sensitive,” he said.
“They need tools, they need training and they need to be confident in engaging in those discussions and I don’t think many clinicians are that comfortable. So that’s certainly an area where we need more work,” You said.
“We need to discuss these goals of care head on, instead of putting them off, putting them off, which is what tends to happen.”
Refusal to face reality of death leads to increased use of aggressive, futile health-care efforts
So much needless suffering, panic and fear could be alleviated if discussions surrounding death and the processes were not such a taboo topic. It's so beyond time for some really honest, reality based conversations, in families and in society in general.
