Thirteen cases of patients and their relatives were reconstructed by non-participant observation and record examination (see Table 1). Five narratives of PC unit professionals were reconstructed from interviews and in-hospital observation, of these all were female, age group was 25 to 40 year; two psychologist (Ps), one pediatrician (P), one general physician (GP) and one social worker (SW). For work experience in PC, one (GP) with 10 months, three (Ps and SW) with 2 year and one (P) had up to five years. No body refused to participate or dropped out.
Table 1
Case
|
Setting
|
Family
|
Social Security (SS) & support services
|
Observations
|
Medical Diagnosis
|
B
|
Urban
|
Extense family (6 members)
|
With SS & Foundation support services
|
The mother and the grandmother in psychology and social work meetings
|
Meningoencephalitis viral etiology (chicken pox)
Severe consequences & focal epilepsy by management.
|
C†
|
Urban
|
Nuclear family (four members)
Mother: head of the family
|
Without SS nor support services
|
The mother in social work meetings.
|
Malignant brain tumor. Resection and brain swelling.
|
A
|
Urban
|
Extense family (10 members)
|
With SS & Foundation support services
|
The mother and the patient in psychology meetings.
|
Primary Embryonal Synovial Sarcoma in pelvis, with metastasis in abdominal peritoneum & lungs.
|
J†
|
Urban
|
Extense family (8 members)
|
Without SS nor support services
|
The mother and the father in psychology meetings.
|
Gastroschisis with first intention closure
|
G
|
Rural
|
Nuclear family (5 members)
|
With SS
|
The mother in pediatric and social work meetings.
|
Tricuspid atresia
|
MB
|
Urban
|
Nuclear family (4 members)
|
Without SS, Toddler’s milk support.
|
Parents workshop with the psychologist
|
Pierre Lobin syndrome.
Cornelia de Lange syndrome.
Phocomelia.
Pulmonary hypertension.
Poor swallowing mechanics.
Central apnea.
|
R
|
Urban
|
Nuclear family (5 members)
|
With SS & social support service
|
The mother and the patient in psychology and social work meetings.
|
Brain tumor
|
Y
|
Urban
|
Nuclear family (5 members).
|
With SS
|
|
Regressive syndrome. Bilateral hypoacousis.
|
J
|
Urban
|
Extense family (11 members)
|
With SS
|
The father in psychology meeting
|
Non- convulsive status epilepticus.
Structural epilepsy & corpus callosum hypoplasia.
Congenital laryngomalacia.
|
CN†
|
Urban
|
Nuclear family (4 members). (The family is identified as indigenous at least in part)
|
With SS
|
The mother and the patient in psychology and social work meetings.
|
Congenital Glioblastoma multiforme .
|
S
|
Urban
|
Nuclear family (6 members).
|
With SS
|
The mother in psychology meetings and social work meetings.
|
Congenital neutropenia
|
M
|
Urban
|
Nuclear family (5 members).
|
With SS
|
The mother and the father in psychology meetings.
|
Lung deficiency & heart disease.
|
JP
|
Urban
|
Nuclear family (3 members).
|
|
The mother and the patient in psychology meetings.
|
Hipotonic syndrome, breathing problems
|
† Children who passed away before the article publication |
The hospital setting where the research took place is described, together with the history of the Palliative Care Unit. The common themes that have been identified are represented by selected excerpts picked from the field diary and the interviews.
This research was carried out in a highly specialized pediatric hospital that especially caters to socially and economically disadvantaged children from central Mexico.
Palliative care in an everyday context
The Palliative Care Unit (PCU) was first conformed by a group of pediatricians interested in palliative care, five years before the unit officially appeared on the hospital’s organization chart. Out of their concern for prolonged hospital stays of cancer patients, a project arose which sought to reduce the length of stay, strengthen community health care networks, and thus develop child/family care circuits connecting hospitals and households. This change proved to be cost-effective, so the hospital began the process of setting up the Palliative Care Unit, which officially opened a year later, in October 2018. In the first year (2018-2019) the unit provided care to 250 patients and their families, with a 50% rate of home care services (Palliative Care Unit, 2019).
The PCU team comprises a pediatrician (P) with a master’s degree in palliative care and bioethics, and four non-permanent health professionals: a medical intern (MI), two psychologists (Ps) specializing in family therapy, and a social worker (SW). To quote the head of unit, “this configuration of the team is ideal for a highly specialized group,” as the team is focused on providing care as well as doing research into the social and economic aspects of palliative care. The Palliative Care Unit is located in a single small office shared by all team members; home care is a priority, so visits and telephone follow-ups are a key part of the team’s activities.
Daily life in the PCU can be overwhelming. While all team members interviewed had a hard time describing a typical day, they all agreed that it varied a great deal, with multiple duties ranging from recording new cases, to visiting the hospital admissions unit, administering interviews with parents or caregivers, providing help to navigate post-death formalities, and offering grief workshops for parents and relatives. As described by three of the PCU team members, their department of only five health professionals deals with a heavy workload in a large hospital specializing in providing complex medical care. Their work helps build bridges between pediatric patients, attending physicians, and children’s families, in addition to creating support networks for the problems that families face in the home and hospital setting.
We identified the following central themes from the analysis of the cases of the patients/families, and the health professional interviews: 1. The relationship between the exercise of proxy agency and the medical decisions concerning underage patients. 2. Negotiating agency and supporting decision-making. 3. Child autonomy. 4. Experiences of health professionals. 5. Limitations of palliative care. 6. Bureaucratization of palliative care.
1. The relationship between proxy agency and the medical decisions concerning underage patients
In a hospital setting, the voice of the parents replaces that of their children. In the observed cases, when the child is very young or when her abilities to communicate have been compromised, parents relay what their child is going through or feeling, letting the physician know whether she is in pain or tired, whether she eats, and so on. They claim that they understand what is happening with their children to pass this information on to the health professionals. The minors’ ability to act in the world is limited by their age and life-threatening illness, which is why that agency is transferred to, or assumed by, parents, in what we call proxy agency:
“He (J) doesn’t say anything, he doesn’t say that he’s in pain. We know him and we know what he does and doesn’t like. That’s why when they do something to him that I know he doesn’t like I have to tell them that” (case of J).
When the child does not have the ability to communicate, palliative care professionals ask parents directly instead of asking the child. Health professionals bear in mind the child’s limited ability to communicate due to their health condition by asking easy questions about daily life or other matters related to their health:
G asks Axel what he wants to do. Axel’s mother says he wants to keep going to school and going out. G tells Axel and his mother that it is very important that they reach an agreement that both find acceptable. At this point, Axel’s mother repeats that she does not want him to go out alone by himself. Finally, they agree that Axel can continue going to school in the morning as long as he gets his friends to walk him back from school (case of A).
As far as the decisions about treatment or those with far-reaching implications, it is parents who communicate their wishes related to the future of their children.
Both [parents] say that they want their child to continue having all relevant and available medical procedures (case of O).
“Many parents will tell you, ‘my girl doesn’t want anything’ so I respect that. There are also many parents who keep saying, ‘no, I’m not giving up, I see that my boy carries on fighting so I am not going to give up,’ or ‘if she’s not surrendering, neither will I and I will keep at it.’ So obviously the child has no way of expressing her autonomy... [In other cases] it can be seen more in older children that when they say ‘I give up, I don’t want this anymore,’ the parents follow suit by saying ‘okay, not anymore’” (GP).
The children’s ability to act, that is, execute agency and express it through decision-making, is assumed by their parents, who express what they want for their child rather than what the actual child wants. The professionals we interviewed report that the child’s opinion is considered, although it is the parental opinion that will matter when making important decisions. It is a kind of proxy agency.
“When the worst is about to happen, a seven or eight-year-old kid will tell you what she wants, and more so if they are teenagers. It becomes very clear that you have to listen not only to the voice of the parents, but also that of the children. Everything considered, it is the parents who make the final decision, but they can’t force their child, the child’s opinion has a certain weight to it already, and it’s our responsibility to give them options for a good quality of life which don’t conflict with the decisions they make” (P).
2. Negotiating agency and supporting decision-making
Decisions about treatment and its consequences are arrived at by the attending physicians and relayed to the parents, who are not always ready to make their decision immediately. In these circumstances, the doctors engage the support of the PC team members as mediators to exercise the agency (proxy and parental) in decision-making from the perspective of the child’s quality of life.
With doctors, it [the communication] has to be very close, because as palliative care workers we support the physicians [from other departments of the hospital] in managing their patients… As far as the parents go, you need to help them make treatment decisions that their doctor proposes. The parents will often be the first to say, ‘I don’t want [the child] to be given anything if you can’t promise he will be cured.’ And the doctors, especially oncologists, would often say, ‘there is a 1% chance that he will carry on, that he will live for three more years.’ Yes, but being a part of that 1% entails a lot of suffering and it’s not a given that the child will fall into that 1%... but [we the PC team ask], what do you and your child want? That is our work as a link between parents and doctors ( GP).
3. Child autonomy
For health professionals, reaching autonomy is a process connected to personal development:
“… Whether they will grow up to be autonomous, to have autonomy, depends on how they’re brought up, right? [In] the development process, sick children often have some pros and some cons, perhaps parents can be too caring, and their ability to accept or reject these decisions, as with adolescents” (Ps).
The agency of children/adolescents and the family and, therefore, the decision-making in the palliative care setting are guided by the makeup of the PC department, the experience of the PC group, and the structural aspects of care, especially such elements as lack of staffing and shared space for providing private care to parents and children, as this affects the main objective of palliative care—providing a humanistic care for children and their families to improve their quality of life.
4. Experiences of the health professionals.
The experience of working in the PCU was mixed among the team. One constant that was true for all team members was their desire to help patients and their families in distressing situations, as well as to advance the professional’s own learning.
“[...] Because here I learned what it means to see the benefits, to understand what is better for the patient… That is something I didn’t acknowledge before, but now I say yes, I can see it” (Ps).
“The impact that having worked here in palliative care had on me, on the team, the group, was that it has made me more humane, more empathetic… I have seen death, poverty, families, what families are really like…” (Ps).
5. Barriers and enables to palliative care
The aspects limiting the provision of care by health professionals are: communication with the parents; the relationship with the attending physicians, especially oncologists; understaffing in the PCU; addressing families’ living conditions such as the lack of financial resources; domestic violence; or the need to migrate to the city in search of quality palliative care. (Figure 1).
5.1 Communicating with parents: “Whatever you do, don’t lie”
“[Communication is hard] because we’re not supposed to tell the kids their diagnosis. Yes, there’s a barrier between parents and children because the parents don’t want to tell them neither the prognosis nor the type of the disease the kids have, not even that they might die, to explain that this is a possibility. The kids of course realize that and know everything perfectly, but they’re also afraid to ask because their parents aren’t telling them anything. To me lying to children is worse, to tell them ‘you’re going to be fine, you’re going to get well and leave [the hospital]’ when you actually know the kid might be able to leave not because she’s in any pain, but because there’s no cure… Parents must be spoken to; painful as it might be, you need to tell them the truth because it’s the only way for them to face the problem. If they don’t know what they’re dealing with, they can’t face it… you make them do a reality check” (P).
5.2 Room
The consultations in the PC unit offer little privacy to the patients: the place is full of health professionals and the interruptions are frequent, from phone calls, extraneous noises, other professionals and patients coming and going, or maintenance activities. The patients do not seem to find so much interference disruptive; however, the team members and the anthropologist still believe that the lack of room is an issue, as this kind of work requires a more private setting.
5.3 Working together with other hospital health professionals
Working relationship with other health professionals is ambivalent. On the one hand, many physicians consider their unfamiliarity with the role of palliative care as an important omission, along with the associated taboos, or the perception that palliative care is something ‘new.’
“...we still need... people still need to link palliative care with quality of life because always, that is, not even just patients, many doctors, many psychologists say ‘palliative care means [they’re] agonizing, that there’s no cure’” (Ps ).
“...because I feel that much of the medical taboos around palliative care comes from that... from that feeling that you can’t help any more and you feel powerless and frustrated...” ( GP)
Conversely, doctors also mention the need for the palliative care workers to support or accompany hospital health professionals in navigating through the difficult stages of care for children and their parents.
“And with the professionals, with those who are around them, I believe that we [PC team] should also help them, because it’s a difficult process for them too… it’s a grieving process for them… we should care for them too, but we don’t...” (Ps).
5.4 Delay in referring to PC
Late referral to the PCU has many causes including misconceptions, poor knowledge and existing taboos towards PC.
“Educating hospital staff has been a tall order, basically because many doctors believe that palliative care begins when the child is dying, and they continue to refer patients to me who die within hours. This is wrong, this is not right... We’ve been having a hard time establishing contact [with the attending physicians]... to make them see the importance of early referral” (P)
5.5 Structural limits to palliative care
According to team members team members, the inadequate provision of palliative care is caused by a combination of various factors: limited funding in public hospitals; poor sustainability performance of the non-institutional support networks (specifically, NGOs that depend on the flow of donations, which is not constant due to an underdeveloped donation culture in Mexico);and the fact that the unit’s creation is recent.
“Because our patients are very poor, exceedingly poor, we always have to be prepared to help and we have to work with charities, and also look for... I think if we had a shelter, a.... No, not a shelter, if we had a constant flow of funding, we could have some improvements...” (Ps).
Reaching out to the primary health care providers and NGOs that can support patients in conjunction with the PCU is the greatest challenge for the PC team.
“...discharging [the children], which is our main objective, so they can get home. But sometimes the services... the supplies, like a fan that is super expensive or insulin pumps, are what stop us from achieving a certain objective, that is to try to give the best quality of life possible within the hospital” (SW).
“There are no home visits, so the patient has to come to the hospital for care. How am I doing it right now? By phone. But speaking over the phone is not the same as when a doctor is going to see you [in person], to tell you that you are doing well... the challenge is where even that [phone service] is not available [in other regions of the country] in the poorest areas” (P)
Other structural family-related aspects are lack of financial resources for health care, unhealthy family dynamics (such as domestic violence and alcoholism), and the distance to the palliative care centers.
These limitations notwithstanding, we also identified certain facilitating factors to palliative care: a relationship based on respect and dialogue; an empathetic care that can meet the needs of the pediatric patients and their families; a committed interdisciplinary group (as could be seen from the experiences shared by the members of the PC team); out-of-hospital networks aimed at solving certain structural problems of the families and the health care system; and ongoing support using telemedicine.
6. Bureaucratization of palliative care
As part of the hospital procedures in place for patients with complex, life-threatening diseases, parents must sign a do-not-attempt resuscitation order for extreme cases, known as Cardiopulmonary Resuscitation 3 (CPR3). When children are admitted to the hospital, the doctors in different hospital areas push the parents to sign the order as quickly as possible, which is perceived as a lack of empathy by the relatives in the face of pain and suffering of their children; therefore, relatives are reluctant to sign. The CPR3 order is a point of contention between the palliative care unit and other medical areas. The latter oversee drafting the order and storing it in the patient’s clinical record, while the PCU maintains a document called ‘consent under information’ (CBI for its Spanish acronym), which includes the following records: diagnosis, prognosis, disease characteristics, and measures to provide care and avoid invasive therapeutic procedures. The CBI includes CPR3 and the possibility for the parents to revoke the do-not-resuscitate order at any time; the two latter aspects are emphasized to the relatives. The way that explaining and signing works in the PCU is also different. While in the hospital admissions office, parents are urged to sign CPR3 as soon as possible out of the regulatory requirements. In contrast, at the PCU, where signing the order is equally important, it is considered crucial to prepare the parents psychologically, walk them through the document, and give them time to consider it before signing. As it can be seen, these are two different approaches to the same sensitive aspect of care. Palliative care professionals find it ideal that they get involved in the process as early possible.
“When the boy entered a critical stage, the doctor [from the oncology department] insisted that he [the father] sign the form; he and his wife were crying, both were in a really bad way and the doctor just kept going about the [CPR3] form. He [the father] later said had a fight with his wife... He said he made her feel guilty for signing that paper. He said that he apologized to her after” (Case of J).
“The father says that the doctor made him sign the RCP3 form, that it hurt, but that she was in a lot of suffering” (Case of M).
Physicians who are in charge of signing the order consider the process differently depending on whether they are from the PCU or some other department:
“But the relationship between the ‘palliatives’ and other doctors is that [the latter] see it as a legal relationship, as this legal thing... it’s always hard because it's a very legal idea to them, as something that ‘if I don’t do all of it [the procedure], there will be trouble’…” (GP).
The CBI document, signed by doctors and parents, becomes a manifestation of the parents exercising the proxy agency, since the children cannot make decisions concerning their bodies and wellbeing; however, the parents themselves exercise it under the influence of the medical structure:
“It [the CBI document] is signed by the attending physician, the PCU doctor and by mom and dad accepting those conditions. At any rate, that document is revocable... The children as they are, precisely because they are minors, can’t be signing something, right? That is, but yes, it is about working with the parents so that the parents update that paper, if necessary” (SW).