Understanding the Adult

Cancer Patient and Caregiver

Perspective—The Illness Experience
1
Kim Mooney-Doyle

Recent estimates from the American Cancer Society indicate that nearly
610,000 people died from cancer in 2018, that is nearly 1,700 people each
day. In most cases, these individuals are cared for by a family member or
friend. Indeed, 7% of the general population is a caregiver to someone
with cancer (1,2). This translates to approximately 4 million caregivers
for adults with cancer in the United States. While most of these caregivers
are women caring for their spouses and partners, nearly 20% are adult
children of the individuals with cancer. In this role, caregivers often coor-
dinate care and appointments, advise on treatment decision making, man-
age finances, and provide emotional support to the person with cancer. In
fact, recent estimates indicate that even 1 year after diagnosis, caregivers
still provided, on average, 8 hours of care each day (1). The number of
hours likely increases in advanced cancer given that as the severity of dis-
ease increases, symptoms and their management become more intense,
and care moves into the home. Taken together, we see that many individu-
als in the United States are providing increasingly intense supportive and
instrumental care to family members and potentially feel overwhelmed
and underprepared (1).

“Daddy, I love you, but you drive me crazy.”

These were the last words I spoke to my father before he died approxi-
mately 6 months after being diagnosed with renal cell carcinoma. At this
point, he had been receiving home hospice care for several weeks. My fam-
ily and I cared for him throughout this time with the support of hospice
nursing and social work services. It was a privilege to care for him at the
end of his life and I strove to be the best daughter I could be in this heart-
breaking context, yet it was hard. I can smile about the above quote now, 15
years later. But it still reminds me of the bittersweet and complex dynamics
families experience as they lose a loved one. Caring for my father was both
transformational and stifling, complete with times of laughter and frustra-
tion, and it prompted me to become both other-focused and withdrawn.
My perspective on this experience was, and continues to be, informed by
the fact that I am both an oncology nurse and a child affected by a par-
ent’s cancer. Being the person in two worlds can be confusing. One world is
where I can understand the systems of oncology, palliative, and end-of-life
(EOL) care that surrounded my father and family and the experiences of
the healthcare providers. There is a bittersweet world where the image of

Copyright Springer Publishing Company. All Rights Reserved.

From: Handbook of Supportive Oncology and Palliative Care
DOI: 10.1891/9780826128287.0001
4 I. THE WHOLE-PERSON APPROACH

my father lives on in the sweet faces of grandchildren he never met. This

duality informs and inspires my work as a pediatric oncology nurse and
palliative care researcher. This chapter offers theoretically and experien-
tially based approaches to help oncology clinicians in their interactions
with family caregivers of adult patients approaching their EOL.
• A theoretical framework for use by clinicians to interpret and gain
understanding of interactions with family caregivers of the dying adult
oncology patient:
 The family ecological framework illuminates the multiple actors

and their intersecting relationships when a loved one nears the end
of life and will guide the chapter.
 This framework is rooted in systems theory and has four underly-

ing tenets:
 “Individual behavior can only be understood within its social

context” (3).
 “Individuals exist within a number of interdependent systems

and contexts” (3).

 “The reciprocal relationship between individual and social sys-

tems with which they interact are vital for understanding devel-
opment” (3).
 “Variables beyond the level of individual attributes (social and

cultural), especially those that address the interaction between

individual and system, must be included to understand adapta-
tion processes” (3).
 This framework maintains that:

 Individuals, in considering their development, are nested within

families or other groups of loved ones; within communities,

schools, neighborhoods, workplaces; within healthcare systems;
within the sociopolitical context of their immediate area and
beyond (healthcare and social policy that influences coverage of
care, family leave, work protections; science policy that directs
funding for particular areas of research).
 Individual actors and systems change over time, as do their

interactions.
 The patient is at the center of this model.

 Patients affected by life-threatening conditions experience a

range of emotions, are often afraid, and may have had an exten-
sive “diagnostic odyssey” (4) by the time they reach oncology.
 They are exhausted, yet often have to initiate marathon-like

treatment that involves travel, role adjustments, employment

changes, and fears of burdening their families or friends.
 Immediately surrounding the patient is the family and family care-

givers or care partners, a close group of intimately involved individ-

uals with a history and a past (5).
 The group has also traveled along the “diagnostic odyssey” of

monitoring symptoms; suggesting the patient get a symptom

 1. UNDERSTANDING THE ADULT CANCER PATIENT 5

checked out; accompanying the patient to initial primary care

and specialist appointments; providing frontline emotional, psy-
chological, and possibly financial support; scheduling second
opinions and treatment centers; consulting Dr. Google for infor-
mation about the disease that is disrupting their lives; and living
with uncertainty.
 As the AARP policy statement reports, caregivers are a precious,

but limited resource (2).

 Considering the toll this can take on an individual, standardized,

accessible support for family caregivers’ mental health has been

recommended (6).
 These two groups are surrounded by the wider community that

includes places of employment, neighborhoods, places of worship,

and healthcare systems and providers.
 These sites can be both sources of support or sources of stress.

 Family caregivers and patients traverse their surrounding envi-

ronments; thus, not only is each person affected by his or her own
interactions with agencies and institutions, but also by how sim-
ilar interactions affect family members. For example, I was not
only affected by my own interactions with my father’s healthcare
providers, but also by his interactions with those same providers.
 These interactions have implications for the patient and the

caregiver.
• Understanding adults within the context of a family system:
 It is vitally important for healthcare providers to broaden their

understanding of the patient with cancer to the context in which

the person lives as a parent, grandparent, spouse/partner, friend,
employee, and community member.
 Going through this experience, as both a caregiving daughter and

an oncology nurse, it became increasingly clear to me that this

broader thinking was missing in the care of adults with cancer.
 I recognized that the clinicians were trying to get by (and, proba-

bly, often felt overwhelmed and distressed as I often did in my own

work) and I hated to bother them.
 Yes, they were overwhelmed and distressed from a night shift

load of 13 patients per nurse or from caring for an entire unit

as a resident where multiple patients experience cardiac and
respiratory arrest in one shift. I don’t want to minimize the pain
and distress of multiple losses we experience as clinicians. It is
incredibly painful to bear witness to suffering, to feel powerless,
and to work daily in a context in which one’s own suffering is not
recognized (7).
 Yet, there were limits to their understanding of our family or that,

I as a family caregiver, was overwhelmed and distressed, too. This

was our suffering; our family did not get a second chance to do this
the right way. Our beloved family member was dying. We did not get
to leave (8).
6 I. THE WHOLE-PERSON APPROACH

• Caregivers and support:

 There has been a long-standing debate about whether providing

support for bereaved care partners or family caregivers should fall

within the scope of palliative care (9).
 Yet, recent research demonstrates that caregiver health is an import-

ant component of cancer care and should be routinely assessed.

 There are several compelling reasons to assess and support care
partners or family caregivers:
 Supporting the family caregiver can improve the patient’s symp-

tom and emotional outcomes.

 Assessing distress and providing meaningful support to the

family caregivers may improve their health outcomes.

 The healthcare system that cares for aging adults with chronic

life-threatening illnesses is built on the backs of family caregiv-

ers and care partners; quite often, the treatment plans we make
as healthcare providers would not be achievable without care
partner and family caregiver support (18).
 Family caregivers and care partners have identified positive

elements of this role.Targeted interventions for them based in

the palliative care setting can help to elucidate these potential
sources of posttraumatic growth (20).
 Supporting the family caregiver is the right thing to do. No mat-

ter how much one prepares for the death of a family member
and no matter how old the dying person is, the losing and the
loss are still difficult.
 Family caregivers perform medical and nursing tasks that lessen
the ill person’s pain and symptoms, allow for greater independence,
and avoid out-of-home placement (2).
 These effects were especially magnified for those patients with

five or more chronic conditions (19).

 The presence and support of family caregivers influenced

patient quality of life by performing medical/nursing tasks

that decreased pain, promoted involvement in the family, and
avoided institutionalization for the patient (19).
 This report (2) reminds healthcare professionals and policy-

makers that family caregivers are often invisible in the adult

healthcare system, that nearly half perform medical/nursing
tasks in addition to personal care of the patient and house-
hold management, with minimal support and training (2,19).
 “A healthcare system that relies on untrained and unpaid

family members to perform skilled medical/nursing tasks,

but does not train and support them, has lost sight of its pri-
mary mission of providing humane and compassionate care
to sick people and their families” (2, p. 34).
– While the creation of caregiver-friendly healthcare envi-
ronments requires collective effort, “…such action will not
be effective without individual commitment” (2, p. 34).
 1. UNDERSTANDING THE ADULT CANCER PATIENT 7

– Healthcare providers across disciplines can encourage

questions, assess learning needs, and provide information
regarding additional supports.
– Organizations must create environments that facilitate
transitions of patients and caregivers across settings, from
acute care to community settings, and within community
settings as people live with their life-limiting illnesses.
• Family caregivers of adults can experience greater distress and anxiety
than the patient (9):
 Over 40% of care partners and family caregivers report at least 10

unmet needs (9), including gaps in illness management information

and lack of emotional support.
 It is difficult to predict which family caregivers or care partners

will have issues, thus systematic assessment is required that directs

interventions and services.
 This is especially true as the population ages and care partners

and family caregivers face increased duties and responsibilities

of illness management, emotional support, care coordination, and
information seeking.
 Caregivers of older adults experience nearly twice as much psycho-

logical distress versus controls (10).

 “Family caregiving for older adults with cancer is the result of

both demographic and healthcare delivery changes…Cancer

leads to change in family and identity roles, daily functioning,
and the effects of such change can be profound and long-lasting”
(10, p. 269).
 Brief interventions that assess caregiver emotional/social health in

late-stage cancer diagnoses have demonstrated a positive influence

on the caregiver’s perception of EOL care (18);
 Caregivers who perceive that their loved one is receiving high-qual-

ity EOL care may experience better social health than those who
did not receive the intervention (11).
 Family caregivers report positive effects of providing care to the

patient, such as perception of inner growth and strength, mean-

ing appreciation of humor, love, resilience, and feeling a sense of
reward (12).
 Perceived benefits include increased sensitivity and empathy,

greater appreciation for life, development of meaningful inter-

personal relationships, potentially increased self-efficacy, moti-
vation to reconnect family relationships.
 In adult children of people with cancer, posttraumatic growth

moderated the relationship between the stress of the illness situa-

tion of their parent and posttraumatic stress disorder (PTSD) (20).
 The meaning ascribed to the experience or the perceived

growth that results from the experience of caring for a parent

with cancer can minimize the effect of psychological distress
for daughters who are caregivers to their parents with cancer.
8 I. THE WHOLE-PERSON APPROACH

Targeted interventions that support meaning-making or



social connection may help decrease psychological distress

in family caregivers as they live with and survive cancer in
their loved one.
• Five points to guide family-focused care for the adult family caregiver:
 The relationship between healthcare professionals and family
members is vitally important. Similar to the concept of “being a
good parent to a seriously ill child” (13), adults caring for their fam-
ily members near the EOL may also strive to fulfill their internal
definition of being a good spouse, partner, child, sibling, parent,
cousin, or friend. Thoughtful words can help to reframe negative
beliefs and limit feelings of guilt.
 As vitally important as healthcare professionals are, they are but
one part of a system that orbits loved ones with cancer at EOL (14).
Adult caregivers have feet in multiple worlds; sometimes these
worlds coexist peacefully and sometimes they collide.
 Language matters across all sectors of healthcare, EOL care, and
bereavement services. Communication across all sectors of the
healthcare system, from the daily, mundane communication to the
intense, life-altering communication, makes a difference and influ-
ences a caregiver’s perception of the system and those who work
in it.
 Communication may be considered part of the “microethics: the

ethics of every day clinical practice” (15, p.11).

 The conversations between clinicians and nonclinicians

within a clinical setting contribute to constructing the nar-

rative of the family member’s experiences as the patient and
the experiences of the caregivers.
 “Microethics are created in the relational space between par-

ticipants. . .at a particular moment in time…through verbal

and nonverbal communication” (15, p.12).
 The following scenarios I experienced walking the line

between oncology nurse and caregiver daughter illustrate

gaps in communication. These were likely unintentional
microethics infractions; a clinician or nonclinician repre-
sentative of the healthcare system (both the one I person-
ally encountered and the system communicated through
research) entered that relational space between us and I was
left confused and disappointed in both systems.
– Although comical now, it was infuriating when the bill-
ing representative at the hospital asked when my father
expired (I responded, “Uh, he wasn’t a carton of milk.”).
– Or when the insurance representative told me that they
simply could not share billing information with me, that
they had to talk to my father, after he had already died
(I responded, “Um, I wish you could, however, as I men-
tioned earlier, he died.”).
 1. UNDERSTANDING THE ADULT CANCER PATIENT 9

– Or when the nurse caring for him states, “You know he’s
going to die, right?,” when I ask when the team is going
on the round, after I have waited at his bedside all day (I
responded, “Yes, I know, but that doesn’t mean they give
up on him.”).
– Or when research studies and papers call us “informal
caregivers” (I still don’t laugh at this; it still feels pejo-
rative and classist). I am confident that other terms can
be created by this erudite group, including care partners
or caregivers. Researchers and authors should consider
using a term that is more descriptive of our role.
• While “informal” versus “professional” denotes the
difference between those paid for their caregiving and
those who are not paid, the truth is that we, as “infor-
mal caregivers,” can pay dearly for our role in strained
relationships, lost wages, lapses in career develop-
ment, diminished physical and mental health, dimin-
ished quality of life, and strong emotions and negative
thoughts that follow us into bereavement and beyond.
• There is growth and transformation that comes from
the experience of caring for a loved one at the EOL. You
live daily with the humbling recognition that life is so
very short. This growth carries heft with it.
 Even though adults with cancer are the model on which so much of
our hospice system is built, the American health care system is still
built on the backs of family caregivers (2). This takes a toll, yet many
of the caregivers perceive it to be their duty. Health professionals
must help them fulfill this duty in a way that does not harm them.
The experiences of parents caring for children with life-threaten-
ing and life-limiting illnesses may illuminate the drive and strate-
gies that healthcare providers can utilize (16,17).
 Healthcare has got to and can do better. Healthcare providers in
any given field may have limited knowledge of what it is like to live
with the illnesses of their specialty or to be involved as a family
caregiver. Healthcare professionals may also have limited insights
into the role and function if they do not occupy a similar role them-
selves. For example, it may be hard to empathize with a hovering
parent if one does not have children.

In pediatrics, family is a recognized system and integral part of develop-

ment. I think there is a place for it in adult palliative care and oncology, too,
to benefit patients, caregivers, and healthcare providers. It is not enough
to have “next of kin” or a spouse/child’s phone number recorded in the
chart or a healthcare proxy/decision maker. The envelope of care needs to
be broadened since family members suffer, as do the involved healthcare
providers. An earlier inclusion of palliative care could potentially address
that, but the oncology team has to adopt the mindset that family matters.
Family is not just something within the purview of the palliative care team.
10 I. THE WHOLE-PERSON APPROACH

Some might say, “Pediatrics is a different beast.” Parents care for a

vulnerable child, who has limited decision-making capacity and make
decisions in the child’s best interest. Or, in the case of adolescents/young
adults, they serve as surrogate decision makers and incorporate the young
person’s values and goals into the process. Yet, not extending family-cen-
tered care to ill adults erects a false dichotomy. Adult patients may have
reached the age of majority and may have demonstrated capacity, yet the
shock and grief that accompanies diagnosis and life threat, as well as
the cognitive and physical side effects of treatment, amplify the uncer-
tainty and isolation of the situation. A healthcare system, which cares
for ill adults, yet does not incorporate the family, sets the patient up for
failure and the caregivers up for increasing burden, poor quality of life,
diminished health, and potentially complex grief and bereavement. Adult-
focused healthcare providers may like to rely on the four traditional bio-
ethical principles: autonomy, beneficence, nonmaleficence, and justice.
However, this concept has limitations in that it does not take relationships
into account. In the context of oncology and palliative care, relationships
are everything.

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