Palliative care improves quality of life – especially for the terminally ill person’s family caregivers. However, support for bereaved family caregivers is not systematically organised in Denmark. New research shows that bereaved people who say that they miss contact with healthcare professionals are more susceptible to prolonged grief and depression 3 years after the death. The results suggest a need for more systematic risk assessment of family caregivers and their need for support.
A long-term trajectory of an incurable illness devastates everyone involved. During the illness, healthcare professionals maintain regular contact, but this naturally primarily focuses on the ill person and usually ends when the person dies. The bereaved family caregiver may feel abandoned by the healthcare system. A new study shows that this feeling can have prolonged effects on their lives.
“People who said that they missed contact with healthcare professionals 6 months after the death of a loved one were more likely to experience strong grief and depression for 3 years after the death. Relatives can greatly benefit from bereavement support to prevent further complications, and contact with a general practitioner seems to be especially important, so we suggest a more proactive approach, assessing the support required by a family caregiver and risk of complications early during a person’s terminal illness trajectory,” explains Mette Kjærgaard Nielsen, Part-time Lecturer, Department of Public Health, Aarhus University.
Intense grieving continues
A total of 55,000 people die each year in Denmark, many of them after extended illness, and the vast majority of deaths affect several close relatives. In the current and previous studies, researchers from Aarhus University investigated family caregivers’ contact with their general practitioner, consumption of medicine and self-reported experience of missing contact with healthcare professionals after the death.
“Close family caregivers can be physically and emotionally burdened both during the illness and after their loved one dies. Exceeding the caregivers’ physical and mental resources can lead to long-term grief and depression. Our study aimed to determine whether people who experienced missing contact with healthcare professionals were more likely to experience grief and depression after losing a loved one,” says Mette Kjærgaard Nielsen.
Prolonged grief disorder is a recently defined syndrome that is a specific reaction to losing a loved one. Grieving is a natural reaction, and the symptoms of grief subside over time for most people. But the feeling of intense grief that adversely affects their daily lives continues for a small group of people.
“Prolonged grieving is characterised by intense yearning and pervasive longing for the loved one to an extent that impairs normal mental, social and daily functioning,” explains Mette Kjærgaard Nielsen.
Noticeable loss of function
The participants were asked a series of questions before their loved ones died that could help the researchers determine whether the participants were likely to have prolonged grief disorder and depressive symptoms before the death. Six months after the death, the participants again completed a new questionnaire asking whether they had been in contact with a general practitioner or other healthcare professional.
“Sixteen percent of the participants said that they wanted more contact with a general practitioner to process their grief, but even more important, these people had four times as many symptoms of prolonged grief and five times as many strong symptoms of depression over a 3-year period,” says Mette Kjærgaard Nielsen.
People with prolonged grief disorder have increased frequency of certain feelings, thoughts and actions, and the disorder is often associated with considerable functional impairment. Previous research also shows that these people consume more prescription medicine.
“The results indicate that bereaved individuals can greatly benefit from bereavement support to prevent further complications. It is therefore important to proactively assess the need for support and the risk of complications early during the illness trajectory so that the family caregivers who need support can get it,” explains Mette Kjærgaard Nielsen.
Systematic identification required
Many family caregivers who experience prolonged grief disorder already have more frequent contact with their general practitioner and higher consumption of antidepressants and sedatives than those who have fewer strong grief reactions over time.
“This suggests that preventive initiatives could identify this group earlier. The problem may be that general practitioners are the primary care provider, but no system ensures that general practitioners are warned to be alert because one of their patients has had a death in the family,” says Mette Kjærgaard Nielsen.
The Central Denmark Region has attempted to ensure a systematic approach to bereavement intervention as part of a collaborative agreement on palliative care. Hospitals clarify with family caregivers whether they want a follow-up interview after the death and ensure that a contact is established with whom the family caregivers can speak.
“Something has to be done differently and better in Denmark, and this seems like a good and important step on the way to helping the family caregivers who appear to have severe mental challenges to live their own lives optimally,” concludes Mette Kjærgaard Nielsen.