Families of patients receiving palliative care are profoundly affected by the challenges of the illness. They witness patient care, provide care themselves, receive support from health professionals in the form of information, and may also receive counseling and practical assistance. Throughout, they judge the patient's quality of care. They often see themselves as advocates and may harbor lingering regret and guilt if they believe that the patient did not have the best possible care. The illness experience profoundly affects family members’ psychological and physical health; recognition of this has coined the term “hidden patients.”1
By Barry R. Ashpole
IAHPC Board Member & communications consultant
Terminal illness can bring into sharp relief both the strengths and weaknesses in a family. Their ability to pull together in support of the patient as well as each other is crucial to how well everyone ultimately copes with the illness experience.
Invariably, families bring a lot of personal history to the patient’s bedside. If the family environment has been or is conflictual this can seriously undermine the best efforts of the care provider or care team as a whole. It goes without saying that a family at odds is hardly conducive to “dying well.” Conversely, a caring and loving family can make an incalculable contribution to the patient’s well-being and to the relief of the patient's suffering and the easing of caregivers' grief. Interpersonal relations and a family's ability to communicate is particularly relevant with regards to the often difficult task of decision-making.
It is important to be reminded that defining “family” is not straightforward. It does not necessarily refer only to the biological or traditional family. In palliative and end-of-life care, “family” is defined as those closest to the patient in knowledge, care, and affection, which more accurately reflects contemporary thinking, societal norms, and the reality of human relationships today.
Family caregivers are often not acknowledged as active participants in the illness experience. They invariable face a steep learning curve, with no job description and, more often than not, little or no training. They walk a tightrope without much of a safety net to catch them if they fall. Enterprise, resourcefulness, and stamina are proven prerequisites.
Time is always at a premium for family caregivers, and decisions invariably need to be made quickly. They need information when they need it; often when they are exhausted and at their most vulnerable. Effective communication can be thwarted by lack of time allotted for meaningful dialogue.
Empathetic communication and sensitive and timely dissemination of information is fundamental to supporting family caregivers. And as illness progresses, communication and information become more critical. There is a direct correlation, therefore, between the quality of communications and the quality of care.2
Communication is and of itself a therapeutic intervention. Well-informed families are better able to function in a caregiving or supportive role and, consequently, experience less illness-related stress, which can affect the patient.
Retaining information, however, can at times be a challenge, so it is important to titrate information. There are several ways to accomplish this:
They need practical tips and "how to" information, such as who to call if an emergency occurs between visits from the hospice or palliative care team.
On a cautionary note, it can be tempting when a caregiver doesn’t speak your language to ask a colleague or family member to interpret. It’s hard to see how medicine could function in a multicultural society without them, especially in emergencies.
However, this comes with its own potential risks. A family member may give you their own version of events, and the things they choose to emphasize may skew the whole consultation. It can also be difficult to check the veracity of the interpretation, which could lead to a misdiagnosis. Similarly, a family member may find it hard to share difficult or bad news and they may have emotional or cultural reasons to distort your message to the patient.3
Faced with a situation they have likely never been in before, family caregivers often experience a lack of self-esteem and their confidence can be shaken. However, an understanding of the nature of the illness and knowing what to expect can make caregiving tasks giving less burdensome. It also prepares the family caregiver for what may lay ahead as illness progresses and end of life approaches.
Other factors need to be considered, such as: individual beliefs and values; culture, ethnicity, language and religion; literacy and socioeconomic factors; family dynamics; experience with serious illness; and, ability to cope with crises. Bear in mind that hearing impairment in older caregivers is often overlooked.
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