Keywords
ethical issues - breaking the bad news - end-of-life issues - oncofertility
Introduction
Ethics is an integral part of medicine and healthcare professionals are obligated
to make sound clinical decisions, reduce harm, by considering the patient's religious
beliefs, cultural values and societal norms.[1]
[2]
[3]
[4] In this regard, the four main principles of bioethics “autonomy, beneficence, nonmaleficence,
and justice” form the base for all ethical dealings and behavior in healthcare sciences.[2] Importantly, all healthcare workers have to remember this and take the most suitable
decision and choose standard medical interventions by keeping the best interest of
the patient and their family members as priority.[2] On the part of the treating doctor, honoring these principles during medical practice
and in personal life is considered ethical to ensure that he is doing full justice
to his patient and their family members.[1]
[2]
[3]
[4] Treating doctor has to also ensure that the patient's rights are protected in accordance
with the recommended guidelines on moral principles and will also have to help the
patients and their family members navigate through the trajectory of the treatment,
recovery, and rehabilitation.[2]
In addition to this, the healthcare professionals will also have to follow the principle
of sincerity and accountability for the decisions they take while attending to the
patients and their family members while making complex choices [5] considering the moral norms of the right conduct that transcends the barriers of
cultures, geographical regions, and religions.[1]
[6] Principally, moral norms which by definition means “rules of morality that people ought to follow” are classified in to two groups as common morality and particular morality.[1]
[7] Terminologically, common morality indicates aspects like not causing any harm or
suffering to others but instead relieving them of it, while particular morality refers
to norms that tether people to their culture, religious beliefs, and professional
standards.[7] It is also important that the healthcare workers and the treating doctor endure
value in cancer care by focusing on patient's physical and psychological welfare with
empathy and professionalism.[2]
[3]
[4] In spite of all these guidelines, healthcare workers face a multitude of ethical
dilemmas at regular intervals, and at most times they are distressing and difficult
to handle.[8]
[9]
When compared with other specialties in medical sciences, the ethical issues in cancer
care are divergent and complicated. Some of the most important ethical issues reported
are in the areas of cancer screening, genetics, diagnosis, breaking the bad news,
the extent of patient information to be provided, and topics in planning the optimal
treatment, follow-up, cost–benefit aspects, psychological and physical rehabilitation,
sexuality and reproductive aspects, supporting the caregivers, transitioning from
curative to palliative treatment, care of vulnerable groups, and the various end-of-life
issues.[10]
[11]
[12]
[13] On a practical note, arriving at an ethical decision for some of the above said
aspects is straightforward and with a solution, while few end as unresolved and inflict
conflicting moral injury, feelings of frustration, and powerlessness in the oncology
staff.[8]
[9] On a comparative note, when compared with the developed countries, the situation
of helplessness and moral injury in healthcare workers working in cancer care in resource
limited developing countries may be more, but is under reported.
Previous studies aimed at understanding the most difficult situation for medical doctors
in treatment and care of cancer patients in Indian context had indicated that breaking
the bad news was the most difficult.[8]
[9] Although myriad factors are documented to be associated with the complexity and
difficulty in breaking the bad news, in the Indian context one of the important factor
that contributes to the difficulty is the role of the family member in the process
and requesting to withhold information from patients.[14]
[15] The principal reason for this is that the family members feel that revealing the
bad news can cause fear and depression in the patient and can lead to self-harm and
suicide.[14]
[15] For a treating doctor, the conflicting requests of the patient versus that placed
by their family members present a dilemma because withholding information from patients
is against the tenets of medical ethics.[1]
On the contrary, most patients are desirous to know the prognostic details, treatment
choice and the sequence, side effects, chances of recurrences, complications of treatment,
quality of life, and the life expectancy posttreatment.[16] Nonmaleficence is the principle of refraining from causing unnecessary harm and
not informing the patient about their diagnosis and prognosis can cause anxiety and
affects adversely.[1]
[17] The principle of justice mandates that the patient is informed of the diagnosis
and made fully aware of the nature of his disease to allow them to be prepared for
the disease trajectory and course of the disease treatment, and to face the adversities
effectively.[1]
[17] The act of withholding information is maleficent and affects the patient autonomy
and beneficence.[17]
[18] On the contrary, it is accepted to be beneficent to discuss the treatment options
and allow the patient to choose.[19]
In principle, a doctor should ideally follow the principle of autonomy in accordance
with good clinical practice with the recommended evidence-based treatment.[1]
[17] Some doctors often adopt a paternalistic attitude toward the diagnosis and treatment
of patients and feel that the person who is ill does not have much role in treatment
decision.[20] It was only in the recent past that physicians have begun to accept the importance
of patient's autonomy.[20]
[21]
[22] Even today, physicians from the India are hesitant to break the bad news [23] and have reluctance to allow individual autonomy. This is common in several Asian
societies that believe autonomy is more collective rather than being individualistic.[24]
[25]
[26]
Technically, accepting autonomy would mean that the physician and the patient would
become partners in arriving at choices and decisions in the planned treatment and
the schedule.[21] In this, the physician dons the role of teaching their layman patient to make logical
decisions and must encourage and motivate them to make the right choices.[27] The “Autonomy” provides patient with their individual prerogative to the knowledge
of their disease, its prognosis, the treatment choices, their benefit, ill effects,
and costs.[22] This is especially important when a critical decision needs to be arrived at with
regard to choosing complex treatment.[28]
[29] At times, when the doctor upholds patient's right to autonomy, he may also have
to face the distressing challenge of watching the patient make erroneous decisions
like choosing anecdotal alternative treatment or refusing treatment.[30] The important aspect here with is that the treating doctor will have to devote sufficient
time to help and guide the patient and their family member with provision of care
that is standard, cost-effective, and individual specific.[31]
[32]
Clinically, the right of the patient to make decisional control preferences is a major
predictor of patient satisfaction and the doctor must actively assess a patient's
decisional control preferences to ensure optimal communication and patient satisfaction.[16]
[17] For the treating doctor, this is an important aspect as this paves the way for a
fruitful conversation and for arriving treatment decisions through discussion.[16]
[17] Reports also suggest that the educated patients desire more information than patients
with less formal education [15]
[33] and that they value doctor's ability to provide sufficient details with emotional,
structural, and informational support.[34] Also, patients who prefer to be active in decision-making during illness want more
information about their illness and sequelae during and after the treatment.[19]
[27] On the contrary, studies by Ghoshal et al[16] have also shown that patients affected with advanced cancer prefer passive decisional
control, where the family members make decisions on their behalf.[16] In the subsequent sections, the ethical dilemmas faced by oncologists in breaking
the various bad news in oncology are addressed:
Initial Diagnosis
The disease cancer is associated with severe apprehensions, and reports suggest 50
to 90% of the patients expect a full disclosure,[35] and under these circumstances, the way the bad news is broken assumes importance.
Historically, breaking the bad news was seldom done and the accepted practice was
to withhold information from the patient as it was believed to be in their best interests.[36]
[37] However, in the recent past, most doctors and professionals share information with
the patient along with their family caregivers. In most instances, the physicians
break the bad news either directly to the patient or to the family member or the patient's
caregiver with utmost sincerity and empathy.[38] Precisely at this stage, the doctor becomes a witness to shock, denial, rage, dismay,
fright, acceptance, and sadness, intertwined with confusion and distress that culminate
in heartbreaking emotions of the patient and their family members.[39] The situation is more complicated when breaking the bad news is about a child or
when the individual is the sole bread earner with children and family to support.[8]
In India, at most times some family members exercise their right to autonomy and request
the doctors to keep the diagnosis a secret from the patient citing psychological breakdown
of the patient or fear of inflicting self-harm and suicide.[15]
[16] At this stage, most doctors and healthcare professionals find themselves at crossroads
unable to decide whether they should follow and honor the patient's right to confidentiality,
or if they should not disclose the information to the patient in accordance with the
family's wish.[8] Under these situations, the treating doctor will have to assess the mental condition
of the patient, ascertain the situation, and carefully divulge the details and the
extent of information on cancer to the patient without breaking hope in an empathetic
manner. Also, at times in certain cases, the doctor may have to answer questions like
“Why me” or “Why did this happen to my family” presenting a difficult situation.[8]
The Transition from Curative to Palliative Treatment
The Transition from Curative to Palliative Treatment
In cancer, the therapeutic objective is principally to eradicate the ailment. However,
at times, during the ongoing treatment, the clinical signs and diagnostic results
can indicate that the patient has an aggressive refractory cancer and the planned
treatment is not as effective as previously observed in other patients and expected
to be. At this point, and more so when there are no alternative effective modality/regimen
available, the treatment objective shifts from curative to palliative care. For the
treating physician and the associated healthcare staff taking care of the patient,
this is an extremely difficult situation and emotionally demanding.[40] This is principally because, during the course of the treatment, a bond would have
developed between the patient, their family, and the healthcare workers, and the realization
that the patient's health condition is plummeting is difficult to express for the
treating doctor.[8]
When Cancer Has Recurred or Metastasized after Curative Treatment
When Cancer Has Recurred or Metastasized after Curative Treatment
The third and one of the most difficult situations for any doctor is to tell a cancer
survivor treated long back that cancer has recurred or has spread to distant organs.[8] From the patient's and their family's perspective, the curative treatments are associated
with severe immediate and long-term side effects and the patient endures it with the
hope of living for self and their loved ones. With time, the intrinsic resilience
and coping skills help the individual recuperate. Also, a strong support system and
love from the family and the community help in reducing the ill thoughts and reintegrate
the survivor back into society. Breaking the bad news that cancer has resurfaced triggers
flashback memories of painful events endured by the patient and their family members
during the initial curative treatment and informing the bad prognosis to the patients
and their family members is distressing.[8]
End of Life Situation
The end-of-life situation, which by definition “is the last few days or hours in a patient's life,” is very tumultuous and draining to the family.[41]
[42]
[43]
[44] In most cases, the common symptoms seen include fatigue, pain, dyspnea, lack of
hunger and thirst, delirium, drowsiness, short attention span, respiratory secretions,
confusion and delirium, sudden movement or jerking of the body, labored rapid or hard
noisy breathing, sounds of groaning or moaning indicating progressive decline in patient's
health.[41]
[44]
[45] A patient whose death is imminent will require medication to mitigate the ill effects
and provide comfort and have a less suffering death.[42]
[43] Morally, at this point of time the healthcare workers will have to also focus on
supporting the family members, help them understand the progressive trajectory of
the disease, and to expect death of their loved one anytime soon.[42]
[43]
[44]
[45] The healthcare team has to also support and honor the patient's treatment preference
and worse at times make decisions on withholding or withdrawing life-sustaining treatments.[41]
[45] For the healthcare workers, these are very distressing and breaking the bad news
of imminent death is a difficult task.
Breaking News of Death to Bereaved Relatives
Breaking News of Death to Bereaved Relatives
Death, although an indispensable fact of life, is very difficult for the loved ones
of the deceased to accept.[46] For the treating doctors, it is very difficult to convey to the family members that
their loved one has succumbed to the ailment.[46] The problem is severe especially when the death is sudden than when expected. On
a relative grade, in oncology breaking the news of death is not that stressful as
relatives are aware of the serious nature of the illness and death is anticipated
in advance.[47] However, there are instances in oncological setups where breaking news of death
can be extremely difficult especially when the patient is a child, or when the family
bonding is strong with the deceased individual. In these situations, the relatives
of the deceased patient are sensitive and the atmosphere is emotionally charged and
use of any unsympathetic callous words and neglect on the part of the treating doctor
or by the healthcare staff can cause severe grief response.[46]
[48] Worse such instances can trigger angry action, maladjustment, violence, and vandalism
against the staff and the hospital.[46]
[48] From a treating doctor's perspective such situations are extremely difficult. In
these situations, the professionalism, empathetic communication, and the rapport the
treating doctor has developed with the patient's family play a vital role.[49] In addition to this, facilitating the bereaved family to carry out the cultural
and religious procedures always has a beneficial and long-lasting opinion of gratitude
and appreciation toward the treating doctor and the hospital.[50]
[51]
Cancer during Pregnancy
Pregnancy brings joy, happiness, and satisfaction not only to the couple but also
to the extended family. Reports suggest that malignancies during pregnancy are extremely
rare and accounts to 0.07 to 0.1% of all cancer.[52] Of all cancers, the most common malignancies reported in pregnant women are cancers
of breast, cervix, ovary, melanoma, lymphomas, and leukemia.[52]
[53]
[54] The ethical issues that arise in the process of care of the pregnant woman with
cancer are extremely challenging because both chemotherapy and radiation, the two
important modalities, are cytotoxic and can irreversibly affect the fetus.[55]
[56] Clinically, emphasis is to provide the best possible cancer treatment by minimizing
harm to the fetus and planning safe maternal and neonatal outcomes. In this regard,
factors like the gestational age of pregnancy, site and stage of the cancer, the planned
treatment and its impact on the pregnancy need to be critically analyzed before initiation
of the treatment.[57] The oncologists will have to coordinate with obstetrician and pediatrician, and
have detailed discussion on proposed treatment considering the mothers and child's
well-being.[57]
[58]
Clinically, if the fetus is above 36 weeks in age, delivery of the child is facilitated
through normal process or through cesarean section, while if it is below 24 weeks,
abortion may be required. These decisions that are based on tumor board discussion
will be decided on the basis of the site and tumor prognosis and on the necessity
for treatment intervention. Attempts are will always be toward saving mother and the
child, while when faced with the inevitable choice of only one, the woman's life is
the priority. Chemotherapeutic agents are mutagenic and teratogenic and can affect
the fetus. Hence, there is a conflict of interest for use of chemotherapy in a pregnant
patient. Although very rare, for the oncologists, breaking the bad news to a couple
expecting their baby and in worse case scenarios that the baby may need to be aborted
is an extremely difficult choice to make.
Body Disfigurement
Cancer surgery causes body disfigurement and this is observed in people affected with
head and neck, breast, cervix, and penile cancer.[59] Performing partial or extensive excision of the organs to eliminate the cancer causes
limited or severe functional and cosmetic changes and adversely affects the quality
of life.[59] On a comparative note of all organs, the disfigurement of the head and neck has
been extensively investigated and severely affects the functional efficacy of the
oral cavity and also alters the facial appearance.[59] To support this, studies have shown that body image concerns should be ascertained
before surgical intervention in oral cancer patients as disfigurement induces psychological
stress and depression, and the patient and their family members should be aware of
it in the initial stages and take part in discussion process [60]
With regard to breast, cervix, and penis, the surgical excision can help achieve complete
cure when the cancer is localized and in early stage.[61]
[62]
[63]
[64] When compared with oral/head and neck cancer, the disfigurement is not visible.
However, disfigurement in these organs can affect sexuality and this can severely
hamper the psychological well-being, the sexual, and marital life, especially in the
young cancer patients in the reproductive age group. This is ethically a very sensitive
issue for the treating surgeon and factors like the age of the patient and socioeconomic
factors during the breaking of the bad news can further complicate/aggravate the dilemma.
Fertility and Sexuality Issues
Fertility and Sexuality Issues
Cancer modalities like chemotherapy and radiation affect the rapidly proliferating
normal tissues like the germinal epithelium and cause premature ovarian failure and
azoospermia in females and males respectively.[65]
[66] In the past, main focus had always been on saving the life of the patient, and issues
like loss of fertility were never considered.[67] The recent advances in oncological diagnosis and effective treatment have increased
the disease-free condition for many cancers especially when detected early and the
tumor is localized and in early stage.[67] Also, in recent years due to increased awareness and screening, the incidence of
cancer being detected in people in the reproductive age group is high.[68] The early diagnosis and effective treatments have increased the patient survival
and procreation and children of their own are desired by many cancer survivors with
disease-free and good health condition and in the reproductive age group.[67]
[68]
[69]
In the recent past in the developed countries, “Oncofertility” has been gaining importance
and fertility preservation like oocyte vitrification and sperm banking for female
and male cancer patients is undertaken before start of cancer treatment.[69]
[70]
[71]
[72] However, the concept of fertility preservation is yet to gain acceptability and
implemented throughout India. Worse there is no insurance coverage for oocyte or sperm
preservation and this affects the patients and their family members. Under these situations,
chemotherapy is initiated without preserving the gametes. For the treating doctor,
it is very demanding situation to express the oncofertility issues to the parents
of children and to young adults of reproductive age planning family.
Cancer Treatment-Induced Health Complications
Cancer Treatment-Induced Health Complications
In the recent past, cancer treatment-induced long-term side effects are being documented
principally because the advancement of oncological treatment has increased the disease-free
condition and survival in many patients.[73] Most of the side effects observed are understood to be specific to the treatment
modality and the drug used for the curative regimen.[73] In cancer survivors, these side effects appear months or years after the completion
of the treatment and present an additional health risk to the survivor. Some of the
important long-term side effects include chemotherapy (Herceptin/doxorubicin/ daunorubicin/
epirubicin/ cyclophosphamide), radiotherapy-induced heart problems, drug (bevacizumab/sorafenib/sunitinib)-induced
hypertension, chemotherapy (bleomycin/carmustine/methotrexate)/radiotherapy-induced
lung damage, drug (cisplatin)-induced kidney damage, and drug (chemotherapy, steroid
medications, hormonal therapy)-induced osteoporosis.[73]
In addition to this, cancer treatment can induce metabolic syndromes like central
obesity, dyslipidemia, hypertension, and insulin resistance in higher incidence in
childhood cancer survivors and people with improved survival and disease-free conditions.[74] Also when compared with the general population, cancer survivors are at higher risks
of cardiovascular events.[74]
[75] In cancer survivors who are disease-free, the development of these health issues
adversely affects their quality of life and also causes severe financial toxicity.
For oncologists, breaking the bad news of the development of long-term cancer treatment-induced
side effects and addressing cancer survivor's apprehensions is difficult. This is
principal because the oncologist is aware of the ordeal the patient has gone through
and the statement “why me” and “why this now” has a colossal impact during breaking the bad news.
Conclusions
The current review attempted at presenting the difficulty healthcare workers and oncologists
working in cancer care face in India especially with breaking the bad news. The review
is based on an in-depth study performed with various groups of healthcare workers
in both oncological and nononcological settings for the past 5 years. The most important
problem was with regard to handling emotions of not only the patient but also of the
doctors and other healthcare workers. Gauging the reaction of the patient amid response
would compromise the veracity principle, by taking the easy way out. Handling familial
pressures and vagaries of treatment can lead to complications further, inciting problems.
Such important issues were left to the hidden curriculum, forcing the medical fraternity
to grapple with their imitable manners, which have antecedent risks. We emphasize
that a structured training program that focuses on breaking the bad news through dyadic
and triadic communication skills is necessary. Also, it is recommended that efforts
should be directed toward improving the communication skills of healthcare workers
and residents. Also, it is strongly recommended that structured training programs
should be included mandated in the healthcare curriculum as this training will help
in the effective handling of ethical issues.
