Cancer care can be seen as a three-legged stool. Whereas, the centre of attention is the patient, care cannot be provided without 
healthcare providers and caregivers. Quality caregiving 
enhances the patient’s physical and emotional well-being. 
The informal caregivers in oncologic practice need 
enhanced support, whether faced with the imminent 
demise of a cancer patient or in the long-term care 
of survivors. Yet, in cancer care protocols, informal 
caregivers are often neglected; a compromise of their 
quality of life is a foregone conclusion.1 For example, a 
physician whose sibling is wasting away from advanced 
cancer may express their angst by expressing “she [the 
cancer patient] is the strong one in the family”. Young 
parents may mask their emotions to hide their distress of 
seeing their child with neuroblastoma buoyant between 
cycles of chemotherapy.

What do cancer caregivers witness, cope with, buffer 
and express? A spouse, parent, sibling, partner or close 
friend may take the first steps to becoming a caregiver 
when they are present when the diagnosis is given. The 
impact of this news is, at best, a close second in intensity, 
to what the patient experiences. One has witnessed both 
sides of the coin—the patient who receives the diagnosis 
with equanimity as those close to the patient dissolve 
in tears or, a family member assuming strength and 
hope when the patient retreats into shock or denial. 
Caregiver’s involvement in cancer care varies from 
culture to culture, but also across time in care of the 
same patient. The caregiving spectrum can range from 
silent/supportive to paternalistic/decision-maker.

As the initial trauma of acceptance of the diagnosis 
subsides, caregivers begin a journey of frequent hospital 
visits and witnessing the physical and psychological 
effects of therapy. Many undiscovered attributes of the 
caregiver can arise: patience, attentiveness, dependability 
and trustworthiness. A absence from the workplace, lack 

of attention to daily chores and children’s needs and 
abandonment of lifestyle activities may become the 
new norm for the caregiver. There may be simultaneous 
financial struggle due to mounting medical expenses. In 
addition, legal ramifications of inheritance, in the event 
of the patient’s death, become an unspoken dilemma. 
Quality of life, including effect on physical health, spir- 
ituality, psychological distress and social support has 
recently been reviewed across a range of caregivers.2

The success of advanced oncologic therapy with 
resultant long-term survival has brought hope to patients 
and families. Cancers are curable or can be treated as 
chronic diseases. The effort to sustain chronic care- 
giving increasingly affects the caregiver’s personality 
and physical well-being. As the disease progresses, the 
caregiver may have to take responsibility for adopting 
unproven or minimally beneficial and often expensive 
and confusing second- and third-line options. Homecare 
in the palliative setting may challenge the caregiver by 
the administration of pain relief or other medications 
as well as a more intimate observation of deterioration 
and suffering. The Stressful Caregiving Adult Reactions 
to Experiences of Dying scale has been used to aid in 
early identification of caregivers stress level due to dying 
patients’ critical health events.3 

When cancers progress rapidly, attempts at coping 
with the situation either induce yeoman efforts or prove 
overwhelming; witnessing a child’s suffering can be part- 
icularly devastating. Post-bereavement, caregivers are 
called cancer survivors and their recovery can manifest 
in multiple ways: a lifelong phobia of cancer; failure to 
return to a healthy lifestyle or relationships; continued 
support to other family members such as children and 
parents; and/or long-term economic burden.

Despite the many challenges integral to cancer 
care, some caregivers may gain a sense of satisfaction 
in this humanitarian mission; caregiving may enrich 

1College of Medicine, Mohammed Bin Rashid University of Medicine and Health Sciences, Dubai, UAE; 2Department of Medicine, Sultan Qaboos University 
Hospital, Muscat, Oman; 3Visiting Faculty, International Center for Chemical and Biological Sciences, Karachi University, Karachi, Pakistan
*Corresponding Author’s e-mail: ikramburney@hotmail.com

ملن ال يقرع هلم اجلرس
القصة امللحمية غري املرئية ملقدمي رعاية مرضى السرطان

ريتو لكتاكيا و اإكرام بريين

For Whom the Bell Does Not Toll
The invisible saga of cancer caregivers

Ritu Lakhtakia1 and *Ikram Burney2,3

editorial

Sultan Qaboos University Med J, November 2019, Vol. 19, Iss. 4, pp. e275–276, Epub. 22 Dec 19
Submitted 28 Aug 19
Revision Req. 11 Nov 19; Revision Recd. 30 Nov 19
Accepted 3 Dec 19

https://doi.org/10.18295/squmj.2019.19.04.001

 This work is licensed under a Creative Commons Attribution-NoDerivatives 4.0 International License.

https://creativecommons.org/licenses/by-nd/4.0/


For Whom the Bell Does Not Toll 
The invisible saga of cancer caregivers

e276 | SQU Medical Journal, November 2019, Volume 19, Issue 4

life and instil pride and a sense of purpose. In some 
cultures, such as in the East, familial bonds oblige one 
to provide care to other family members, providing a 
sense of satisfaction and dutifulness. Religious anchors 
endorse caregiving as a noble means of obeying the 
commands of God. Some caregivers see the opportunity 
to learn new skills, socialise, make friends and have 
gone on to champion this cause, such as by creating 
non-governmental organisations.

The emergence of excellence in oncologic therapies 
on the one hand and holistic cancer care on the other, 
have been the hallmarks of the fight against cancer. Out 
of necessity, research has focused on the patients and 
their disease while the multi-nuanced experiences of 
cancer caregivers remains undiscovered and as a result 
they may be unprepared and untrained to support their 
loved ones and protect themselves. Psychoeducational 
interventions have been the predominant approach 
to caregiver interventions while adaptive flexibility in 
the format of interventions is recommended.4 Further 
research should be carried out on outpatient cancer 
care and reinforcement of caregivers’ capacity and well- 
being at all levels of healthcare.

Misconceptions of cancer caregivers should be 
addressed via recognition, awareness and supportive 

inclusion in the cancer care paradigm. In this era of 
rapidly evolving and expanding technology such as 
educational websites, internet-based support groups 
and smartphone applications, a technology-driven inter- 
vention may be helpful in this regard. Healthcare 
professionals and social support mechanisms should 
unite and support each other to empower silent care- 
givers.

References
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2 Ochoa CY, Buchanan Lunsford N, Lee Smith J. Impact of 
informal cancer caregiving across the cancer experience: A 
systematic literature review of quality of life. Palliat Support Care 
2019; 7:1–21. https://doi.org/10.1017/S1478951519000622. 

3 Galatsch M, Prigerson HG, Schnepp W, Zu Sayn-Wittgenstein F, 
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