When a loved one is terminally ill, it is often a stressful time for the family and the dying person himself or herself. The loss of a loved one can also cause a major emotional crisis. Some emotions felt are denial, disbelief, shock, sadness, despair, guilt, yearning, anger, and confusion. These are common emotions to grief and loss, giving reasons why bereavement should bring families closer. However, a new study by the University of Alberta grief researcher has found that a dying loved one often tears families apart.
End-of-life intra-family conflict
Donna Wilson told Medical Xpress that family conflict is common as members gather during the dying process. Everyone involved is hurting and it is easy for disagreements to flare up. For years, Wilson worked as a bedside nurse and she witnessed family members fighting with the dying person or arguing over their parent’s deathbed. This kind of conflict is harmful as family ties are significant during such a challenging time, she added.
Wilson, who is now a nursing professor at the University of Alberta, reviewed 18 scientific studies and it revealed that conflict may arise at various points during the dying process, including end-of-life care and/or decisions over withdrawing life support. Some family members fight whether to move their parents out of a hospital or put him or her in a hospice.
Other US studies likewise show that 37% of families reported fighting as the death drew near and 57% have conflict as their loved one was dying. It is also the same in Canada. Citing another study that she’s working on, Wilson noted that 100% of families are likely to experience period conflict. A Japanese study likewise states that 42% of families encounter at least one argument during the end-of-life phase.
The conflict is common enough that family members need to be aware of such a dynamic along with doctors, nurses, and everyone else involved in the process, the author pointed out.
Why family fights are less recognized as an end-of-life issue
The nursing professor suggested that family fights may not be well-recognized as an end-of-life issue since there has been a gradual shift of care from hospitals to nursing homes or homes. More deaths occurred in hospitals until about 1994 when families begun to trust healthcare professionals in making major decisions. Families have also become more involved as end-of-life care shifted to homes. Wilson said that patients are also encouraged to make their own decisions, such as living wills.
The related stress, though, leads to various flashpoints for the family members. Some of them may feel they have to say no on behalf of their parent while others feel it was their responsibility to try to keep their loved one alive. This is why family disagreements over end-of-life care or patient treatment as observed in the scientific studies were a big one.
A scenario where some family members show up out of the blue and say they wanted to be in charge of decision-making or be involved in care can also be disruptive, Wilson said. Another major factor is "prior family conflict." Most often, there are past dislike, hurt feelings, or distrust among family members and these dynamics can make it difficult for a family to come together. Years may have also passed since family members have interacted that they don’t have something in common to go on other than the matter about the dying loved one. If such is the case, there is a higher chance that family members will argue instead of pulling themselves together for the good of that family member.
Dying process: a factor that aggravates the intra-family conflict
The researcher further noted that the dying process itself may also aggravate the conflict. Most people may not have yet seen a dying individual wasting themselves away on a deathbed so it becomes a shock to see their loved one in that situation. Study shows that in Canada, only 25% of people aged 15 and older have taken care of an ill family member in the past year. End-of-life care adds stress to the situation. Some family members need to change the diaper of their parents, who they once see as someone strong, or they have to tend a loved one who cries out in pain. These things take a toll in various ways.
When one is frustrated, he or she may choose to completely stay away from the dying person. They will not visit the sick or come to the funeral because it’s too difficult for them to deal with. However, by doing so, they may not get to have the last meaningful conversations with the dying loved one.
The study author also said that it would be a loss to the dying person if family conflict means that they won’t get what their health needs, such as palliative care – providing relief from symptoms and stress of the illness. Another situation is concerning adult patients nearing the end of life. They may have chosen their home as their place of death but because of family conflict, they just stayed in the hospital until their last moments.
A 2007 study titled Choice and place of death: individual preferences, uncertainty, and the availability of care, Daniel Munday from the University of Warwick and colleagues explained that enabling patients to die in their place of choice depends on healthcare providers’ understanding of the patient’s prognosis.
Palliative care: statistics
The World Health Organization published that an estimated 40 million people around the world need palliative care each year but only about 14% who need palliative care currently receive it. The majority (78%) of them are from low- and middle-income countries. In a 2017 survey by database company Statista, over a quarter of hospice patients in the US receive service for only a week or less while 12.7% receive the service for 8-14 days. Some 14.1% of US hospice patients stay for more than 180 days.
Families of palliative care patients encounter numerous stressors, including grieving of the impending loss itself. Bringing a mediator may help so family members can try to agree about the matter or they can sit down and work out the issues, like having a visiting schedule.