Perspectives of good death and dying among patients with cancer, their caregivers, and health care providers: qualitative study
Aura Rhea D Lanaban,1,2,3 Rojim J Sorrosa,1,2,3,4,5,6 Maria Elinore A Concha1
1Department of Family and Community Medicine, Southern Philippines Medical Center, Bajada, Davao City, Philippines;
2Department of Family Medicine, Metro Davao Medical and Research Center, Bajada, Davao City, Philippines;
3Department of Family Medicine, Brokenshire Memorial Hospital, Brokenshire Heights, Madapo, Davao City, Philippines;
4Davao Doctors Hospital, Quirino Avenue, Davao City, Philippine
5Department of Family Medicine, Ricardo Limso Medical Center, Ilustre St, Davao City, Philippines;
6Department of Family Medicine, San Pedro Hospital of Davao City Inc., C Guzman St, Davao City, Philippines
Correspondence Aura Rhea D Lanaban, aurarhea_jc@yahoo.com
Received 2 February 2016
Accepted 5 December 2016
Cite as Lanaban AR, Sorrosa R, Concha ME. Perspectives of good death and dying among patients with cancer, their caregivers, and health care providers. SPMC J Health Care Serv.. 2016;2(1):8. https://n2t.net/ark:/76951/jhcs4jt8z4
Abstract
Background. Social backgrounds, cultural beliefs, ideologies and experiences of well-being all affect people’s perspectives on good death and dying.
Objective. To describe the perspectives of patients with cancer, caregivers and health care providers on good death and dying.
Design. Qualitative study using constant comparative method.
Setting. Southern Philippines Medical Center in Davao City, Philippines.
Participants. 7 patients with cancer, 5 caregivers, and 8 health care professionals.
Main outcome measures. Concepts of good death and ideal dying process from interviews with study participants.
Main results. Of the 20 participants, 16 were females and 4 were males with ages ranging from 16 to 64 years old. Three interrelated themes emerged from the interviews. First, participants recognize that an omnipotent force external to the self control when and where death happens and the circumstances around death. Second, participants believe that good death happens when one is ready for it. Readiness for death entails having lived life according to one’s purpose in life, achieving emotional closure with loved ones, and having accepted that death is near. Finally, for our participants, the ideal dying process happens at home, is free of uncomfortable symptoms, and is experienced with the family and friends of the dying person.
Conclusion. Participants in this study recognize that an external force controls the time and place of and circumstances around death. For our participants, good death happens when one is emotionally ready for it, and it is important to provide physical and emotional comfort to an actively dying person.
Keywords. spirituality, readiness, comfortable dying, constant comparative method
Introduction
Death in cancer is unique and greatly feared
because it is commonly associated with a
long dying process, as opposed to the
relatively “quick death” in other causes of
mortality. However, this protracted phase near
the end of life can give patients more control
over what happens to them and their
environment while they are dying. Terminally
ill patients with cancer can potentially control
pain, discomfort and other symptoms, and
they relatively have ample time to settle their
interpersonal issues and say goodbye to their
loved ones before they die.
1Dying is the multi-dimensional process
that leads to death. The process of dying
affects not only the physical body, but also
one’s psychosocial aspects and immediate
social environment—i.e., family, relatives,
friends, etc.
2 Several studies done among
Western cultures asked terminally ill patients,
as well as their families and health care
providers, about what they consider important
at the end of life. Frequent responses
included optimum pain control,
3 4 5 6 7 being involved in making diagnostic and therapeutic
decisions,
3 8 psychosocial support, from the
family,
6 7 9 spiritual support and having meaningful emotional closures with loved ones.
3 4 10Many notions tend to be strong in particular cultures. In Muslim societies, having a
sense of self-esteem, projecting a positive
image of the dying person among his or her
relatives, and assuring economic and social security of the family, are regarded as very
important psychosocial states that must be
attained before a person dies.
11 Some cultures
take great care in avoiding posthumous
physical distortions, fatal wounds, or bad
odors and make sure that a person’s body
looks as normal as possible after death as
part of preserving the dead person’s selfesteem.
11 Among Asians, good death is
associated with having physical and psychological comfort, having a natural death,
and being respected as an individual.
5 As to
the manner of dying, one study among
adults with lung cancer reported that patients
describe a good death to be peaceful, painfree and quick, and to occur during sleep.
12 Patients preferred a quick death, with little
suffering and not amidst their children’s
presence. Some patients expressed fear of
being seen by their children in a state of
vulnerability as they die.
6 In an Asian study
among bereaved families of patients with
cancer, caregivers said that being physically
present during the final moments and being
able to bid goodbye to their dying loved ones
are important to them.
6Filipinos have close-knit families. It is
common and expected among Filipinos to
personally take care of family members and
relatives during times of illness. The concept
of hospice and palliative care has not yet
gained a firm foothold among Filipinos since
its movement began in late 1990s
13 probably
because of this prevailing approach to caregiving. Many patients with cancer who are
brought to the hospital for hospice care
usually believe that they may eventually have
complete cure. Health care practitioners also
tend to be more aggressive than what is
called for when managing patients with
terminal illness. Many physicians hesitate
withholding therapy or making do-notintubate and do-not-resuscitate orders during
appropriate situations.
14 Because of insufficient knowledge and experience, health care
practitioners have difficulty in helping
patients make advance directives for end-of-life care.
15 To date, there are no established
procedures or guidelines in preparing Filipino
patients and their families for death. A
strong basis for such guidelines would be the
different notions of good death among
those who are likely to have pondered more
deeply on death. We did this study in order
to describe notions of good death and the
ideal dying process among patients with
cancer, their caregivers, and health practitioners who provide medical care for them.
Methods
Research team and reflexivity
This study was done in Southern Philippines
Medical Center (SPMC), a tertiary government hospital in Southeastern Philippines.
SPMC has fully departmentalized wards and
outpatient clinics, as well as a Children’s
Cancer and Blood Diseases Unit (CCBDU).
The Department of Family and Community
Medicine (DFCM) in SPMC runs a Hospice
and Palliative Care Training Program
(HPCTP), to which most of the hospital’s
patients with cancer needing their services
are referred.
One of us (ARDL) conducted all the
interviews. The two other authors (RJS and
MEAC) helped in the planning, data analysis
and reporting of the results of this study. All
of us were trained in Family Medicine, have
strong background and training in clientcentered counselling, and are consultants in
SPMC. Two of us (ARDL and RJS) subspecialize in Hospice and Palliative Care. Two
of us are females, and one is male.
Study design, participants and setting
In this qualitative study, we utilized the
constant comparative method
16 17 18 to identify
and characterize notions of good death from
interviews among patients with cancer and
their caregivers, and among health care practitioners.
All in all, we were able to interview seven
patients with cancer, five caregivers, and eight
health care professionals who responded to
our poster invitation to join the study. We
already knew four of the patients prior to
their participation in the study since they
have been referred to us for palliative care.
As Hospice and Palliative Care consultants, we
(ARDL and RJS) have been active in the
management of the four patients for 6 to 12
months prior to the actual interviews for this
study. For each of the three other patients,
our interview for the study was our first indepth conversation. The five caregivers who
participated in our study were relatives of
five of the seven patient participants. All of
them decided to join after each of their
patients signified participation in the study. We
all personally knew the eight health care
professionals we interviewed for this study.
They have been working either in the
CCBDU, in HPCTP, or in the outpatient
clinic of the DFCM in our institution for at least 3 years.
We obtained written informed consent
from all participants. Prior to the actual
interviews, we asked each of the participants
to answer a two-page questionnaire that
includes questions on their clinical and
demographic data. The questionnaire also
contained the four questions of the Primary
Care Evaluation of Mental Disorders Patient
Health Questionnaire (PRIME-MD PHQ-
4DA) to screen the participants for clinical
depression and generalized anxiety disorder.
19 Data collection
For each participant, we did a one-time, face-to-face, individual interview in a secluded
room in SPMC. We carried out the interviews
using four general questions taken from the
objectives of this study, namely—“What is
your concept of a good death?” “For you,
what is the best way to die?” “Where is your
preferred place of death?” and “Who would
you like to be present when you die?” We
asked subsequent questions after each of
these general questions to probe their main
answers. All interviews were audio-recorded.
We were given written permission by all
participants to audio-record the interviews.
Each interview ran for an average of one hour.
Data analysis and reporting
We transcribed all the interviews verbatim.
All three of us (ARDL, RJS, MEAC) read
and coded the transcripts separately. Two of
our colleagues (JGLA and ASC) with background in social research also helped us in
coding and analyzing the transcripts (see
acknowledgment). We identified themes from
among the participants’ answers to each of
the four general questions by noting emerging or recurring notions of good death and
the ideal dying process. We also used the
answers to the probe questions to further
characterize the properties of the emerging
themes and triangulate our findings. Five
more colleagues (SSBE, CXDL, RCR, ELLB,
JJSA) helped us in preparing this report (see
acknowledgment). We lifted quotations that
could best illustrate the emerging themes
that we identified from the transcripts. We
then translated the non-English quotations
to English and incorporated them in the
results portion of this report. Translation
was contextual, rather than literal. The
initials that appear after the quotations in the
results section are codes and are not the real
initials of the participants.
Results
Description of participants
Among the 20 participants included in this
study, 16 were females and 4 were males. All
of the seven patients with cancer were
females, with ages ranging from 16 to 64
years old. Four of the patients were single,
while three were married. Six of them
completed high school education, and one
graduated from a college course. Of the
seven patients, three were Catholics, two were
Protestants and two were Muslims. As to
family life cycle stage, one patient was an
unattached young adult, three belonged to
families with adolescents, one came from a
launching family, and two were from families
in later years. The patients have been having
cancer for less than one to four years. All of
them have been informed about their illness.
Their diagnoses and cancer staging as of the
time of interview include colon cancer stage
IV, cervical cancer stage III, rhabdomyosarcoma stage IV, osteosarcoma stage IV, chronic myelogenous leukemia, and breast cancer
stage II.
The caregivers who participated in our
study were five family members—two mothers, a son, a husband and a niece—of the
seven patient participants. Their ages ranged
from 22 to 47 years old. The youngest
caregiver had a college degree and was single,
while the rest graduated high school and were
married. Two of them were Muslims, two
were Catholics and one was Protestant.
The health care providers included in our
study were five physicians and three nurses,
with ages ranging from 27 to 36 years old. Two
of them were males and six were females. Five
were single and three were married. Six were
Catholics, one was Muslim and one was
Protestant.
All twenty of the participants were
screened with the (PRIME MD PHQ-4DA)
and were negative for anxiety and depression.
Emerging themes
Three interrelated themes emerged from the
interviews that we processed: the control of
life, dying and death is external; a good death
is something that one is ready for; and, it is
ideal for one to die comfortably.
Recognition of an external locus of control. Death is regarded as universal and something that inevitably happens to everyone. It is an event at the end of life. A mother of one of our patient participants said that one ought to accept that death eventually happens.
“...bug-os jud na madawat na nimo na taman
nalang ka dira. (...it is absolutely important
that you accept that your life ends at that
point.)”
- WR, 36 years old, mother and caregiver of a patient with rhabdomyosarcoma stage IV
An external omnipotent force beyond
one’s control willfully determines, as if
through a master plan, the mundane course
of one’s life, including the time of, place of
and circumstances around one’s death. This
deference to an all-powerful other externalizes the locus of control of life, dying and
death and helps one come to terms with the
inevitability of death. To Christians among
our respondents, this omnipotent force is
God; to Muslims, it is Allah. Two of our
participants said,
“...sa akoa, wala ka nagsuffer sa imong sakit,
and you have your family with you... maabot
man ang time na kuhaon na gyud ka sa Ginoo. (...for me, as long as you do not suffer, and
you have your family with you... time will
really come when God decides to take
you.)”
- OE, 29 years old, Catholic, female nurse
“Si Allah na lang bahala kung asa ko niya kuhaon. (As to where I die, I leave it to Allah.)”
- DL, 45 years old, housekeeper, Islam, female patient
with colon cancer stage IV
This omnipotent force that people
believe in is also the source of meaning and
purpose of one’s life. How one is supposed
to live life is something that one seeks for
and discovers through a strong relationship
with the omnipotent force. A person can
lead a good life by living it according to how
the omnipotent force has meant it to be lived.
A life well lived ends in a good death.
These notions of death provide the contexts on which to view the other emerging
themes in this study.
A good death is something that one is ready for. A good death is something that one is
ready for. Having experienced and understood cancer and having been told about the
prognosis of their illness, patients in our
study were aware that death for them is
imminent. For patients with cancer, a good
death is something that one has prepared for. One is ready to die if one has found
meaning and purpose in life, and when life
has been lived according to one’s perceived
meaning and purpose. Two patients from
among our participants said,
“Para sa akin, nahuman nako ug eskwela.
Kanang fulfilled ang pamati. Pero kung will
talaga ni God na kunin ako, tanggap ko po.
Naay acceptance na dapat. (To me, since I
have already finished schooling, there is
this sense of fulfillment. So if it is God’s
will to take me, I accept it. There should
already be acceptance.)”
- CY, 18 years old, female patient with rhabdomyosarcoma
stage IV
“Fulfilled ka, murag nahuman na tanan. (You
feel fulfilled, as if everything is done.)”
- BR, 33 years old, female patient with cervical cancer
stage III
Fulfillment comes from being able to live
life according to how one perceives the
omnipotent force has planned it to be. This
makes it easier for one to say, as life is about
to end, that “all is done” and openly accept
death. As how our participants put it,
“If you have had a good life then you have lived
your life fully.”
- OE, 29 years old, female nurse
“Malipayon sa kamatayon—kanang naay peace
ug nadawat na. (Dying can be happy if one
has peace and has accepted that death is
imminent.)”
- OJ, 33 years old, daughter and caregiver of patient
with breast cancer stage II
Despite the uncertainty of one’s exact
time of death, one can still be ready to die.
Readiness to die is dependent not only on
being at peace with one’s self, but also on
having had a good relationship with others.
Emotional closure and resolution of conflicts with loved ones happen when a person
has settled differences with them and do not
harbor any negative feelings towards them.
Our participants said,
“Kana jud kinahanglan preparado ko ug
nadawat nimo. (What is important is that
I’m prepared and have accepted that
death is coming.)”
- FT, 47 years old, husband of patient with cervical
cancer stage III
“Yung mamatay ka na masaya. Kung may
kasalanan ka, nag-sorry ka na. Apil ang
fulfillment ug acceptance. ([You have a good
death] when you die happy, when you
have already asked for forgiveness for the
wrong things you have done, and when
you have fulfillment and acceptance.)”
- HN, 18 years old, student, female patient with chronic
myelogenous leukemia
“Para sa akoa ang konsepto sa good death is
kanang hapsay ang imong relasyon sa pamilya ug
sa imong sarili nga mubiya sa diring kalibutana
nga wala kay dalang kahiubos, wala kay dalang
aligutgot ug, sama sa gwapo imong relasyon sa
pamilya, ang imo pud panghuna-huna is maayo
pud. Kumbaga ready na ka. (My concept of
good death involves having a good relationship with your family and yourself,
having peace of mind before you die, and
leaving this world without disappointment
or bitterness. In other words, being ready
[before you die].)”
- WN, 33 years old, male physician
It is ideal for one to die comfortably. Our
participants associate good dying process
with physical and emotional comfort.
Physical comfort depends on where and how
one experiences dying. Most of our participants, not only those diagnosed with cancer but also caregivers and health care
providers, associate good death with the
absence of pain. Dying comfortably means
not experiencing any agonizing pain or labored
breathing. Our participants said,
“Kanang painless ug comfortable. ([I want dying
to be] painless and comfortable.)”
- UD, 64 years old, female patient with breast cancer
stage III
“Para sa akin, yung hindi nahihirapan, kanang
di gud nimo makita na naghingalo o nagsuffer. (For me, [dying] should not be agonizing,
and [the dying person] should not be
gasping for breath or suffering.)”
- SR, 27 years old, female nurse
“Gusto nako sa balay ra, pamati man gud nako
na kung sa hospital, daghan pang sakit na
ikuwan... (I want to die in our home, I
believe that dying in a hospital involves
unnecessary pain...)”
- DL, 45 years old, female patient with colon cancer
stage IV
Dying at home is desirable because it
provides emotional comfort during the final
moments of life. The preference to die in a
hospital setting may also be associated with
providing physical comfort for the dying
person. One physician from among our
participants said that she prefers to die at
home, but that she would want her family
members to die in the hospital, presumably
after providing them appropriate medical care.
“Kung ako, sa balay with my loved ones. Pero,
kung family members, gusto ko sa hospital. (For
me, I want [to die] at home with my loved
ones around. However, for my family
members, I want them [to die] in a
hospital.)”
- AK, 36 years old, female physician
A person’s last moments of life are best
spent together with loved ones. The presence
of family members and friends also affords
emotional comfort for the dying person and
provides the last opportunity for everyone to
exchange goodbyes. Two of our participants
said,
“My immediate family and mga close friends.
Kanang palibutan ko sa mga taong nag-love sa
akoa. (My immediate family and close
friends. [I want to be] surrounded by
those who love me.)”
- CY, 18 years old, female patient with rhabdomyosarcoma IV
“Sa balay siguro kay close sa pamilya, then
matan-aw tan-aw siya or kauban pud ang family
sa pagpanaw. ([It is best to die] at home,
with family members who can watch over
the dying person and who will be there
when the person goes away.)”
- IB, 35 years old, male, nurse
Discussion
Key results
From this study, we were able to identify
three interrelated notions of good death and
dying among patients with cancer and their
caregivers, and among health care providers,
namely—the recognition that something external to the self is controlling life and death,
including the time and place of death and
the circumstances around it; one can have a
good death if one is ready for it; and,
physical and emotional comfort while one is
dying makes for a good death.
Interpretation
The reference to an omnipotent force—that
is beyond one’s control and that determines
life, the meaning and purpose of one’s life
and one’s eventual death—is a unique
emerging theme in our study. The belief that
a supreme being determines a person’s life
and death is strong in Filipino culture.
20 21 When diagnosed with life threatening
illnesses, patients are likely to experience
spiritual distress, seeking emotional refuge
from or expressing anger to a higher power,
considering their illness as punishment from
life’s poor choices, questioning the meaning
of life, and even questioning the presence of
the higher power in times of suffering.
22Religious spirituality affects how Filipinos
approach decisions around health, healing,
life, and death. Muslims believe that Allah
predetermines the exact timing and place of
death. The concept of good death centers
on the importance of dignity, privacy and
family security, and emphasizes on the value
of spiritual and emotional support for the
dying person.
11 The phrase
“Si Allah na lang bahala” (“[I] leave it to Allah”)—or
“Ang Diyos na lang bahala” (“[I] leave it to God”) for Christians—implies that the speaker entrusts everything to Allah, God or any external force.
23 Another study pointed out
that, for Filipinos, good death happens when
one comes “to peace with God.”
7 This courteous regard for a force other than the
self is a strong attribute of Filipino religious
spirituality. Spirituality helps in creating
awareness of the present condition in coping
with illness, and in finding end-of-life
comfort.
24 The externalization of the locus
of control of one’s life and death is a way of
recognizing the limits of the self and of
accepting the inevitability of death.
People on some cultures prefer to be
unaware of the imminence of death and to
live a life free of the feeling of confronting
an approaching death.
5 In palliative care,
death is expected as part of the natural
course of the patient’s illness, and sudden
death is uncommon. The lack of preparedness for death can result in complicated grief
among bereaved family members and
caregivers.
25 Our participants emphasize the
importance of being ready for death. The
“readiness to die” referred to by our
participants involves being fulfilled as a
person after living one’s life according to
one’s spirituality.
Readiness presupposes an ideal state that one ought to prepare for or ought to work
towards,
6 even if one’s future is uncertain in
the face of an illness that may soon lead to
death.
26 Reaching that ideal state means
being ready for death. This mindset is
expected since death is itself the inevitable
end that, in a way, one has to prepare for and
work towards. Like the first emerging theme
in our study, this theme showcases the
religious spirituality of Filipinos. For our
participants, the ideal state of readiness
involves having done the things that one
ought to do in life, being at peace with
oneself, and having positive emotional
closure with loved ones. Each of these
elements of readiness has a layer of
religiosity. What one ought to do in life and
being at peace with oneself are based on
religious beliefs regarding one’s purpose in
life. Emotional closure with loved ones
involves asking for forgiveness and seeking
reconciliation from people one has wronged.
Desiring comfort at the end of life has
been described in previous studies.
4 5 6 8 9 11 12 Avoiding discomfort is human nature. The
comfortable dying process described by our
participants entails physical comfort, with
dying occurring at home in the presence of
family and friends. Chronically ill patients
may actually want to die alone or die at a
time when their caregivers are away from
them for a short time.
27 Our participants’
articulation of wanting to die with loved
ones around them speaks of the relationship-centeredness of their approach to
these final moments of life.
28 Being able to
ask or grant forgiveness, say goodbye, or
express gratitude
6 in person translates to
emotional comfort not only for the person
who is actively dying but also for the family
and friends who are physically present.
Strengths and limitations
Unlike previous studies that asked questions
about good death through surveys,
3 5 7 11 the
findings of this study were based on
interviews with participants. The constant
comparative method of analysis that we
employed in this study enabled notions of
good death to emerge from the interviews.
The notions that emerged demonstrate that
the participants’ concepts of good death are
akin to the Filipinos’ general approach to
life, characterized by strong religious spirituality and close-knit relationships with family
members and friends.
This study had a few limitations. Because wwe invited participants using a poster
announcement, interviews were limited to
those that we did with the volunteers who
responded to our invitation. Our study did not
have representation from male patients with
cancer. Only three religions (Catholic, Islam
and Protestantism) were represented in this
study. It is possible that new themes will
emerge from interviews with people with
sociodemographic profiles that are different
from those of our participants.
Implications
A patient-centered care plan for terminally ill
patients can be designed to revolve around
the emerging themes that we have gleaned
from our study. Advance care planning and
discussions can be initiated to prepare the
patients and families for end-of-life events.
25 Our themes on spirituality, readiness and
comfort are all important aspects of advance
care planning and end-of-life discussions that
should be acknowledged and addressed.
Resolution of spiritual issues would facilitate
acceptance and readiness that may eventually
affect the quality of the experience of dying.
It is common notion that physicians’ responsibility do not include addressing spiritual concerns,
24 therefore the subject of spirituality
presents a challenge to physicians and health
care providers. Although spiritual or religious discussions should not be forced, it
should be understood that religion and
spirituality influence ethical and medical
decisions.
29Future research in this area can include
perspectives from male patient participants
and those from other religions or ideologies,
and can explore how these attributes help
shape notions of good death dying process.
The implications of the patients’ experience
of illness, as well as the influence of family
roles and professions, on notions of good
death are also worth exploring in future
studies.
Good death and dying
For our participants—patients with cancer
and their caregivers, and health care
providers—good death happens to a person
who is ready to die. One is ready to die after
gaining a personal understanding of the
meaning of life and achieving one’s perceived purpose in life. A strong religious
influence, especially among Filipinos, underlies this spiritual outlook in life. The meaning
and purpose in life spring from one’s belief in an external omnipotent force. Because
death is universal and inevitable, it is also
regarded as a phenomenon that is controlled
by an external force. A fitting end for a life
well lived is a symptom-free active dying
process that happens at home, where family
and friends are present to provide emotional
comfort to the dying person.
In essence
Concepts of good death and dying vary across different cultures.
In this study, notions on good death and dying include: that life and death are controlled by an external omnipotent force; that good deeath happens when one is ready for it; and that, ideally, active dying is symptom-free and happens at home with one’s immediate family and friends around.
Discussions and planning for advance care prepare terminally ill patients and families for events around active dying and death.
Acknowledgments
We would like to extend our heartfelt gratitude to Alvin S Concha
and Jaryll Gerard L Ampog who helped us in the analysis of our
interview transcripts. We would also like to thank Seurinane Sean
B Española, Clarence Xlasi D Ladrero, Rodel C Roño, Eugene
Lee L Barinaga, and Joseph Jasper S Acosta for their contribution
in editing significant parts of our research report.
Ethics approval
This study was reviewed and approved by the Department of Health XI Cluster Ethics Review Committee (DOHXI CERC reference P13103101)
Funding
Supported by personal funds of the author
Competing interests
None declared
Access and license
This is an Open Access article licensed under the Creative Commons
AttributionNonCommercial
4.0 International License, which allows
others to share and adapt the work, provided that derivative works
bear appropriate citation to this original work and are not used for
commercial purposes. To view a copy of this license, visit
https://creativecommons.org/licenses/by-nc/4.0/
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