Self-Perceived Burden: Complexity underlies this simple term

By Romayne Gallagher, MD,
Division of Palliative Care, Faculty of Medicine, University of British Columbia

A systematic review of clinical studies found that 19% to 65% of patients with advanced disease reported feeling that their care burdened others. For some, it may become intolerable, and may be a factor that drives them to refuse life-extending treatment or request hastened death. 

Caregivers do not necessarily feel that caring for their loved one is a burden. This photo, taken in Hoima, Uganda, is of Liam Calvin with his father Brian Nambale, who said, "Parents or play a big role in the life of children, no matter the sex, either a mother or a father. Our smiles and support improves our children's quality of life in many life-limiting conditions." Submitted to the IAHPC's 2023 Photo Contest. Used with permission.

Self-perceived burden (SPB) is defined as “a multidimensional construct arising from the care recipient's feelings of dependence and the resulting frustration and worry, which then may lead to negative feelings of guilt at being responsible for the caregiver's hardship.” Even the term “burden” is rife with negative connotations about the work of providing support and care.

An open-access set of articles in Bioethics in 2019, edited by Christoph Rehmann-Sutter, Kathrin Ohnsorge, Bregje Onwuteaka-Philipsen, and Guy Widdershoven revealed the complexity of this simply-stated experience. 

Two dimensions of burden

Dr. Rodriguez-Prat et al conducted a systematic review and meta ethnography of 14 qualitative studies to understand SPB among dying patients who had expressed a wish to hasten death (WTHD). The study identified two dimensions of burden: personal and social. 

The personal dimension was described as the influence of being dependent and a burden, on the patients’ self-perception. Patients experienced feelings of guilt, helplessness, uselessness, and loss of self-esteem, some to the point of feeling they had lost their identity and role in life, erasing their life’s meaning.

The social dimension included worrying about how being cared for would affect their family or friends. It was also how the patient perceived they were treated by others, and their fears of being seen as weak or sick. Patients who perceived others treating them as objects—by not respecting their decisions and taking away their control over their lives—experienced a loss of dignity in addition to loss of identity. The authors emphasized that for some people, the WTHD wasn't a direct request to die, but rather a desire to keep living if it didn't negatively affect their family or cause fear about the future.

Is the burden as great as the patient thinks?

Dr. Heike Gudat et al explored how family relationships affect SPB by analyzing qualitative interviews from 62 patients and their informal and professional caregivers (248 interviews!). The patients suffered from a variety of advanced diseases, lived in different settings, and all had access to palliative care. While most expressed concerns about being a burden, patients who held a negative view of themselves within their relationship with their family/caregiver had significantly worse SPB. More than half the patients with SPB developed WTHD. However, many patients with a WTHD chose not to pursue it, because they knew it would burden their loved ones further.

The same article explored the perception of reciprocity and meaning in relationships between patient and family. Firstly, family caregivers often did not feel the same degree of burden as the patient did. The SPB seemed to depend on the patient’s own sense of dignity and meaning, as well as their feelings of reciprocity within the relationship with the caregiver. Secondly, many caregivers noted that caregiving was a way to deal with their own perceived helplessness and brought extra meaning and fulfilment to the relationship. 

Where the relationship was perceived as unbalanced or there were strong conflicting values, there were feelings of burden, particularly on the emotional side. Due to the imbalance, communication about the feeling of burden was non-existent or misunderstood, triggering guilt, shame, anger, and loneliness among patients and their family caregivers.

The article concludes that SPB can be viewed as a moral conflict that challenges important claims and values toward oneself and others. Identifying and making explicit these conflicting values and moral values might be a starting point for a dialogue about the relational and care needs behind SPB. The authors noted that when families could adapt to changes and find new meaning in a relationship, SPB was less likely to occur.

Two approaches to address SPB

Dr. Suzanne Metselaar and Dr. Guy Widdershoven analyze two approaches to address SPB. The “principles-based approach” tends to narrow the issue to superficial considerations: whether the patient is capable to make medical decisions and how a technical solution might solve this distress. It places the decisional burden almost wholly on the patient. This approach takes less time, but divests the humanity from the persons involved and treats them as a problem to be solved. 

The article advocates for a “care ethics approach” that values autonomy but recognizes that we live within a web of relationships and that our decisions affect others. It acknowledges that SPB affects decisions made by patients, as well as their quality of life. To ensure informed consent and begin shared decision-making, the clinician needs to understand the full context of the situation. 

This is a more holistic approach to care, focusing on restoration of quality of life, and aids in maintaining the equity in the patient’s relationships with loved ones. It echoes the principle of palliative care that the patient and family are the unit of care. Potential solutions to SPB involve altering one’s contribution to the relationship or altering one’s perception of the situation. The article discusses leveraging more care for the patient through family and community resources, ensuring treatment of depression/anxiety, if present, and using various counselling therapies. Providing support and respite for the caregiver is part of the approach.

In summary

In summary, fear of burdening others is a complex aspect of adapting to serious illness and is influenced by the dynamics within a family. Creating a space for healing involves finding language that respects the vulnerability of the family system, moral beliefs, and relationships and allows for exploration of these issues. Solutions that enhance a sense of control, relieve burden, maintain dignity, and support adaptation to advancing illness takes time and requires trusting relationships. This is one of the many reasons that palliative support should start early in a life-limiting illness.

References

¹ Bigger SE, Vo T. Self-perceived burden: a critical evolutionary concept analysis. J Hosp Palliat Nurs 2022; 24(1): 40-49.  

² Rehmann-Sutter C, Ohnsorge K, Onwuteaka-Philipsen B, Widdershoven G. “Being a burden to others” and wishes to die: An ethically complicated relation. Bioethics 2019; 33: 409-410.  

³ Rodríguez-Prat A, Balaguer A, Crespo I, Monforte-Royo C. Feeling like a burden to others and the wish to hasten death in patients with advanced illness: A systematic review. Bioethics 2019; 33(4): 411-420. 

⁴ Gudat H, Ohnsorge K, Streeck N, Rehmann-Sutter C. How palliative care patients' feelings of being a burden to others can motivate a wish to die. Moral challenges in clinics and families. Bioethics 2019; 33(4): 421-430. 

⁵ Metselaar S, Widdershoven G. Moral dilemmas in (not) treating patients who feel they are a burden. Bioethics 2019; 33: 431-438.  

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