Twenty-eight semi-structured interviews were conducted. Demographic characteristics of participants are shown in Table 1. The mean age of participants was 37.4 years (ranging from 23 to 59), 82% were physicians (n = 23) and 75% (n= 21) worked in palliative care settings.
Table 1: Demographic characteristics of participating healthcare professionals (n = 28)
Variables
|
n (%) or mean (SD)
|
Sex
Female
Male
|
10 (36%)
18 (64%)
|
Age in years (mean, SD)
|
37.4 (9.6)
|
Race/Ethnicity
White
Mestizoa
Black
Indigenous
Other
|
6 (21%)
20 (71%)
0 (0%)
1 (3%)
1(3%)
|
Education
Medical oncologist
Palliative care physician
Anaesthesiologist
Internal medicine physician
General practitioner
Nurse
Nurse assistant
|
6 (21%)
9 (32%)
1 (4%)
1 (4(%)
6 (21%)
2 (7%)
3 (11%)
|
Discipline:
Oncology
Palliative care
|
7 (25%)
21 (75%)
|
Years of practice with cancer patients at the end of life
Less than 6 months
6 to 12 months
1 to 4 years
More than 4 years
|
0 (0%)
1 (3%)
12 (43%)
15 (53%)
|
SD: standard deviation
a Mix of white and indigenous race
|
Through the interviews three main themes emerged around decision-making and medical practices in the EoL care of patients who are terminally ill with cancer:
- The cancer patient from the health professionals’ point of view
- Physicians’ conditions
- Medical practices at the EoL and their application in the health system
The cancer patient from the health professionals’ point of view (Box 1)
Physical needs. Most participants describe patients predominantly from the perspective of the disease: the symptoms and functional impairment due to the illness. The main source of concern identified for patients, families, and participants themselves is symptom-related suffering, most importantly pain.
Non-organic needs. Some health-professionals described patients’ feelings and other sources of concern such as spiritual aspects, family, and financial matters. Also, physicians consider patients may be afraid of being “abandoned” at the EoL, especially when disease-modifying therapy such as chemotherapy is no longer an option.
Interviewees describe how for patients living in rural areas, the progression of the disease to the end of life, is not only determined by the course of the illness but also by limitations to receive appropriate treatment due to distances and economic implications of displacement to the city.
In Popayan, patients’ culture takes on greater relevance, especially for patients belonging to indigenous populations; they have a different, more peaceful vision of death and their beliefs and traditions expand management options to include traditional medicine.
Caregivers concerns. Participants identify patients as autonomous individuals with the right to be informed and make decisions regarding their health. Later in the course of the disease, when perhaps the level of conscience of the patient is affected, the family usually act as the patient´s representative.
Families residing in rural areas are identified as generally more willing to take care of the patients at home, considering pain, suffering and death as processes that are a part of life, and being used to an active role of families and communities in caring for people. Economic limitations to bring the corpse back to the community for the funeral, should the patient die in a different city, may also influence this willingness. Participants indicate that family members who are reluctant to take care of patients at home seem to be feeling unprepared and have less time and economic resources available to be able to provide the needed care to their relative.
Physicians’ conditions (Box 2)
The doctor-patient relationship. For the health-professionals, the oncologist is the main responsible for cancer patients: providing cancer treatment, giving information regarding disease progression and prognosis, and making initial EoL decisions. Patients often don´t have access to palliative care from an early stage in the disease as a consequence of the way the Colombian healthcare system works and because of shortage of palliative care services. Where oncology services are not available, palliative care, internal medicine specialist and surgeons are identified as those in charge of EoL decisions.
Oncologists report that they inform patients and caretakers progressively from diagnosis, explaining the prognosis and treatment intention in each visit. The majority of healthcare-professionals consider that patients frequently mention not to have been informed regarding their disease status because they are in a denial stage within the mourning process of having a terminal disease.
Empathy (ability to recognize and understand patients’ emotions) and trust are the two main attributes identified by the participants in the doctor-patient relationship, both developed through communication. Participants mention that special skills are required to give bad news and make EoL decisions, to provide clear information without eliminating hope in the patient and conveying confidence from the physicians’ point of view. They mention that this skill is acquired through experience.
Some physicians are identified by colleagues as people with greater empathic ability to communicate with patients at the EoL. Upon interviewing these physicians, we found they had more experience working with patients at the EoL and all talked with their patients about non-organic needs and worries. They express that time invested in these conversations leads to greater knowledge of the patient’s life, builds trust, opens a comfortable space for patients to express their own ideas regarding management options and initiate EoL discussions.
The Colombian healthcare system is another barrier to a trusting patient-doctor relationship; cancer patients are frequently forced to change healthcare provider because of changing contracts between their health insurance and providers. This move from one physician to the next may result in the patient and his family perceiving the treating physician at the EoL as a stranger who has come to bring down hopes and expectations.
Medical practices at the EoL and their application in the health system (Box 3)
Decisions made about EoL care involve changes in the treatment and practices related to dying:
Not initiating or suspending specific cancer treatment (mostly chemotherapy) is a decision made by the oncologist who considers patient's clinical condition, functional and nutritional status as the basis to contemplate treatment options. Participants explain that it is always more difficult to suspend treatments than to not initiate them, and although there are some clinical criteria to guide these decisions, clinical judgement remains key.
Earlier referral to availability of palliative care services would diminish patients´ fear of abandonment and facilitate decision-making. In Popayan, very limited access to oncology services sometimes imply that palliative care is the main attention received by cancer patients from diagnosis, representing frustration for all involved.
Suspending general care measures. This practice most frequently present ethical dilemmas to the participants: who should make these decisions and who should start EoL conversations with the patients? There is no clarity among professionals how these roles are and should be distributed.
Health-professionals identify nutrition as the main source of anxiety at the EoL among patients and caretakers. As long as the patient can eat, intake is guided by patient’s wishes. Oncologists are generally against artificial feeding techniques (enteral and parenteral feeding), other physicians argue these may present possible benefits in terms of quality of life. All participants agreed that once artificial feeding techniques have been established, withdrawing these is almost impossible: this causes ethical dilemmas and confrontation with patients and caregivers.
They algo agreed that artificial hydration, when provided in a home-care setting, requires training, delivery of resources and availability of programs to avoid and manage complications. Oxygen is considered a basic measure and hardly ever withdrawn as this generates feelings of abandonment.
Regarding advanced procedures such cardiopulmonary resuscitation procedures, participants state that patient wishes should guide decisions, but that patients hardly ever have advance directives. Some physicians think patients do not initiate EoL conversations because they do not want to talk about death. Despite this, few health-professionals ask patients directly for their preferences and state that most patients do not express clear wishes.
Some physicians consider “do not resuscitate” agreements are valid medical options in this scenario. Others mention that fear of confrontation with family members and lawsuits can lead doctors to carrying out interventions ranging from initiating artificial feeding techniques to initiating cardiopulmonary resuscitation, even in absence of expected benefits.
Intensified symptom management. All participants considered this practice the basis of EoL care. The existence of opioid medications with different relative potency and routes of administration available in Colombia is one of the strengths mentioned. Barriers to their application are largely because of difficulties in delivery by the health system, the requirement of trained personnel for intravenous administration and ambulatory and home care plans which in Colombia are rare.
Palliative sedation: Oncologists have a clear definition of palliative sedation but consider this beyond their area of expertise. Most physicians working in palliative care have a clear concept of this practice, they commonly consider in-hospital settings and require in most situations a written consent of the patient or caregiver. Some health-professionals consider this practice can accelerate the arrival of death and therefore have ethical objections.
Euthanasia: participants mention to hardly ever receive euthanasia requests, some think euthanasia is not yet culturally accepted and therefore their patients do not request information, others state that they do not feel prepared to discuss euthanasia as they lack clarity regarding the procedures.
Participants think euthanasia should not be mentioned as an option before a patient mentions it himself; this would be considered to go against the principles of professional practice.
One physician believed that some of his patients may have committed suicide and thinks these patients may have considered but never formally requested euthanasia or had difficulties in obtaining approval. Another participant considered that using medications to accelerate the moment of death of patients in the final stages of life can be a valid medical decision to “facilitate a dignified death”, even without the request or consent of patients or relatives.
All participating palliative care physicians were against euthanasia arguing that optimal palliative care is still not accessible to all patients in Colombia and therefore euthanasia should not “replace” optimal care. They also relate euthanasia with a feeling of failure and frustration for not being capable to control patients’ symptoms. Some consider the approved protocol for euthanasia in Colombia technically inadequate, for others euthanasia goes against their personal religious beliefs.