1 Royal Adelaide Hospital SA
2 Royal Darwin Hospital NT
3 Alice Springs Hospital NT
4 Liverpool Hospital, NSW
This is a series of anecdotes by clinicians who, focusing on equitable access to health care, used narratives to highlight issues that had arisen in their experiences of treating cancer and providing palliative care to Aboriginal and Torres Strait Islanders to reduce the morbidity and mortality from the disease.
Four stories highlighted cultural differences that impacted on communication, informed consent, treatment options and gaining trust.
“When I started my Alice Springs Oncology clinic 12 years ago very few of the patients were Aborigines. Now they constitute a quarter of the clinic. The change seemed to be related to a senior Aboriginal woman who I treated for breast cancer. We got on well and she did well for quite some time. Was that important in the increase in numbers in the clinic or was it just coincidental?”
This experience suggested the importance of developing trust in the community which occurred by a positive experience with a highly respected community member.
“I was doing a ward round at the Royal Adelaide Cancer Centre medical oncology ward one Saturday morning with my intern and a ward nurse. We went to the bed of an Aboriginal patient who had seemed quite comfortable and was usually quite articulate. I asked him how he felt and he curled into a ball and indicated that he wouldn’t speak to me. While I was trying to decide what to do next the two women with me pulled the curtains and stepped outside. The man straightened himself up and began to talk to me as normal. I learned later that the man in the next bed, an opal miner from Coober Pedy, had called the nurse aside and told her that the man would not talk to me about his body while women were present. When I reached the opal miner’s bed I thanked him for his help. He said simply, “Some of us know some things, and some of us know others”.
The case illustrated the necessity of being able to understand gender and cultural aspects of care.
“Visiting Darwin before we had the telemedicine link between Adelaide and Darwin and doing a ward round with the local physicians I was asked to explain to an Aboriginal patient with liver cancer his chances of responding to doxorubicin. I wanted to tell him that he had about a one in four chance of it shrinking the cancer. He did not seem to understand. I told him that if there were four men and you treated all of them one would benefit. He wanted to know where the other three went. I tried to tell him that they didn’t go anywhere and that I was only using an example. He wasn’t to put off that easily and he wanted to know all about the other three. I was digging myself a deeper hole and the deeper it got the more my colleagues were amused.”
Information has to be provided in a form that is understood by the Aboriginal patients with examples that will have meaning for them.
“I was asked to see an Aboriginal woman who was an inpatient in Alice Springs Hospital. The woman had metastatic breast cancer with multiple bone metastases and severe pain in both hips where the lytic lesions were threatening to fracture. I did my best to speak to her. I had been told that she would be uncomfortable if I looked directly into her eyes so I looked everywhere else. I began to talk to her about what we could offer her. She stopped me. She didn’t want to hear any more because it was frightening her. At that stage her husband turned up. He told me he was taking her home tomorrow. In the end she agreed to take Tamoxifen tablets. It was a far cry from my ideal of pinning her hips, irradiating them and other painful areas and then offering chemotherapy. I felt that I had failed the patient. The nursing staff tried to reassure me that I had done my best and that agreeing to treat her as she wanted was important and I would probably be asked to see other such patients in the future.”
This case shows the importance of family in decision-making. Clinical authority will need to be shared with such significant family members.
From the epidemiological work of John Condon and others1,2 there is good evidence that cancer mortality in the Aboriginal population is higher than the rest of the population while the cancer incidence is similar. This is likely to be due to late presentation, poor uptake of treatment, and a higher prevalence of malignancies that tend to have a worse prognosis.
From retrospective reviews of chemotherapy treatment at the Royal Darwin Hospital it is clear that the toxicity of chemotherapy is greater in Aboriginal patients, resulting in greater morbidity and mortality. This is mostly due to the high infective burden they carry and the potential for this to interact with the immunosuppression of chemotherapy. This has resulted in policies being introduced to minimise this complication including preemptively treating Strongyloides, ensuring eradication of scabies and ensuring good skin condition, and providing prompt and appropriate treatment for febrile neutropenia in every patient. It also however behoves us to be more critical in applying evidence collected in well conducted trials in urban populations to the Indigenous population, particularly where the benefits anticipated from treatment are likely to be small.
“A 20 year old young man, who spoke no English, and was from Groote Eylandt, an island approximately 600km east of Darwin was electively admitted in July 2003 to the Royal Darwin Hospital (RDH) with a 12 month history of weight loss, associated with diarrhea, and peri-umbilical pain. He was cachectic, had poor dentition and a distended abdomen. There was no peripheral lymphadenopathy. In many ways he typified the late presentation so often talked about with Aboriginal patients. He had malabsorption, was hypoalbuminaemic and folate deficient with anaemia and macrocytosis. HIV serology was negative. CT scans demonstrated abnormally large mesenteric lymph nodes and an abnormally thickened small bowel. Endoscopic biopsy of the abnormal duodenum was initially reported as tropical sprue, a condition found in developing countries and resulting in malabsorption from chronic intestinal infection. The mesenteric lymph nodes biopsied were reported as reactive hyperplasia. He was due to be commenced on Doxycycline antibiotic therapy but he was sick of being in hospital and left, without it.
A month later when he re-presented with similar symptoms a review of pathology showed Immunoproliferative Small Intestinal Disease (IPSID), a type of lymphoma, formerly known in the past as heavy chain disease, or Mediterranean lymphoma. The lymphoma is likely to be derived from chronic antigenic stimulation of the gut from intestinal infection by bacteria and parasites. It has been described in two other patients in the NT, both Aboriginal.
He had brief presentations over six months but refused to stay for more extensive investigations. In January 2004, finally, he agreed to come and a family meeting was held which included his father (most significant person, but who needed cardiac surgery in one month), other relatives and interpreters. This was conducted in a slow and methodical fashion such that everyone present would have the opportunity to contribute. The patient however mostly remained silent except when directly questioned. Even then he was not easily forthcoming. A recommendation that he needed both antibiotic therapy and chemotherapy to potentially cure his lymphoma was conveyed and agreed to. This was also discussed with the local doctor at Groote. However the patient left the next day saying that he was concerned about his mother’s welfare.
He was admitted to hospital later in the month and was given his first cycle of chemotherapy. His father was also an inpatient at the time with cardiac problems. His brother had died four days earlier following an assault, which the patient had witnessed. Due to this and possibly the effects of steroids given with his chemotherapy he became acutely suicidal and required psychiatric intervention.
He then refused to have any more chemotherapy, although he agreed to continue the Doxycycline, but compliance was uncertain. Numerous attempts to try and talk to him or to organise further family meetings were unsuccessful. This was despite using various resources available including the outreach arms of the Aboriginal liaison teams at community level and palliative care, local health clinic and family.
Despite ongoing symptoms and further family meetings he refuses further chemotherapy and has had no further contact with the hospital except for the Aboriginal liaison officer attached to palliative care.”
I find it difficult to understand why any young man would refuse life saving treatment. However, it is clear that he finds the experience of being in hospital and the process of Western medicine extremely unpalatable. This is likely to be due to cultural and language barriers, and impacts on his ability to take up potentially life saving treatment. We know from the renal dialysis studies that communication can be difficult despite the best of intentions. It is extremely important that interpreters are used, however a better understanding of the Aboriginal concepts of cancer through anthropological study would also be valuable in enabling successful communication both ways.
There is an epidemic of death in Aboriginal communities often tangibly interacting, with the person dealing with cancer, having to also deal with loved ones dying around them.
Often decisions about treatment, and consent, can be provided only after family consultation with interpreters and needs to involve the most important family member for that patient. This person often gives the consent and any decision made without their involvement is worthless.
The current model of Western health delivery which is based on efficient ward rounds and rapid clinics is not conducive to effective outcomes in Indigenous people who often require continuity of care, significant involvement of family in slow deliberate and repeated discussions, with treatment given closer to, if not at home.
As a doctor working in palliative care, I take a long-term view of cancer management. I know that decisions made at earlier stages of a person’s illness can have a profound influence on the remainder of that person’s life and on their family and community.
Palliative care is all about maintaining a sick person’s quality of life, and they determine what that quality of life is for them. In palliative care we generally try to look after people the way they want, where they want and how they want. It’s a matter of giving the power to the patients and those who love them. That also helps ensure the care is culturally safe for that person. By cultural safety I mean that a person can use a service given by someone from another culture without risk to their own.
In the Territory, the biggest cultural divide is generally between Indigenous and non-Indigenous people, and currently most doctors and nurses are non-Indigenous people. In order to get the best decisions made, we need to let patients make their own choices. We non-Indigenous health professionals need to acknowledge that we may know very little about our patients, their priorities and their lives. If we don’t give sufficient information to the sick person and their family about their condition or its treatment, or we fail to confer on them enough decision-making power, the wrong decisions can be made.
“An Aboriginal man was referred to our palliative care service by the Alice Springs Hospital after he returned from treatment in Adelaide. He was about 35 years of age and had just had surgery and radiotherapy for a cancer of his throat. His larynx had been removed, so he couldn’t talk, and he also couldn’t eat. He had a tracheostomy which was discharging lots of secretions and had to be cleaned frequently. He had gastrostomy tube and this hadn’t healed well, so it was very sore. He was in a lot of pain.
In Adelaide, the decision had been made to have this operation, because without it he would have choked to death, and he had given his consent on paper, with a thumb-mark. He spoke English as a second language and I never found out whether he had an interpreter present when he gave his consent. At any rate, when he got back to Alice, what he really wanted was for all the tubes that were keeping him alive to be taken out. When he heard that this wasn’t possible, he was absolutely appalled. So clearly he had never understood properly how mutilated he would be and that he would be left with permanent tubes in his body. He certainly had no idea that he was expected to look after these tubes, the cleaning and the feeding business, himself. He made little effort to do this, finding it difficult and distasteful, and his wife, who apparently had understood that his operation would cure him, would not, or could not help. He lived in poverty and had little access to health care, so if he and his family couldn’t manage, that meant he had to stay in hospital, hardly a good solution.
This man had a miserable end. He wasn’t able to be discharged home and after some weeks he died in hospital. He couldn’t communicate, both because of language and of his surgery and also because of a hospital acquired infection, so everyone coming to see him had to wear a gown and mask. He seemed really depressed, was too ashamed to go outside and had nothing to do. I finally learnt that he wanted to paint, but it was even difficult to get him paints and brushes in our public hospital. It turned out he was a rather famous painter and I still have the painting he did before he died, a painting of his country.
I have told you his sad story because it doesn’t have to be this way. If you give the power to the patient, if you give them the full information, use interpreters and cultural advocates where necessary, and let the right people decide, this sort of tragedy can be avoided.”
There are some important issues to consider when helping Aboriginal cancer patients make good treatment decisions. We need to better understand their place in their society and community, the need to work with appropriate family decision makers, the wishes of many Aboriginal patients to remain on their traditional country and the practicalities of care provision in a resource-poor care environment.
Despite the known premature mortality in the Indigenous community, cancer is still a significant cause of death. Indigenous people may develop cancer at a relatively younger age and they are more likely to die from these cancers when compared to non-Indigenous people. They may have young families and many family, social and cultural responsibilities. So their loss is felt very deeply, and someone else will need to do their jobs when they are gone. That might mean they want to try all treatments to keep themselves alive as long as possible, but also that they want to stay on in their communities with their families in the time they have, not to have treatment that takes them far away from home. Then there is the matter of who will look after them, because generally it is these people who look after everybody else.
In Western societies we think of individual people as being “autonomous”, that is they are supposed to make their own decisions about their health. Most Aboriginal families make their decisions communally, but there are generally family members who have a special, culturally determined role in making decisions. These are not necessarily the same people who have accompanied the sick person into town to help look after them. Kin relationships are very important; they determine not only who makes the decisions, but also who will accompany and support the sick person when they need to be in hospital for diagnosis or treatment and who will look after them later on. Aboriginal kinship systems are pretty mysterious to most whitefellas, but we don’t need to know the anthropology out of a book. What’s more useful is to remember not to make assumptions from our own culture about how things should be done and to get the information needed from the person and their family. There is generally someone who will speak for the family, which is the main link you need. So when important decisions need to be made, the right people need to make them and whitefellas won’t necessarily know who these people are. To get it right, you might need to arrange family meetings, and maybe talk by phone or video-link to family members still in their community.
Many Indigenous people want to remain on their country during their illness and also when they pass away. That doesn’t mean they shouldn’t have access to treatments that are only available in city hospitals; it means balancing the benefits of the treatment with the potential burdens and considering practical issues of transport. Again the health care professional should give the information so that the patient and their family can decide.
Many Indigenous people live in poverty and they might not always have good food, accommodation, or even access to running water and electricity needed to keep sick people comfortable. The thing about poverty when cancer care decisions are made is that the doctor in the city may not know the circumstances the person is going home to. So if the person gets a treatment that means they can no longer be looked after at home, it’s a big problem. Before the decision is made to have such a treatment, for example a big operation, its outcome needs to be talked over with those who do know, including the sick person and their primary health care workers.
I started visiting Darwin and Alice Springs as a visiting gynaecological oncologist in 1988, at the invitation of the specialist gynaecologists, who were referring women with gynaecological malignancies to the nearest centre “South”.
One of the big differences to health for women in obstetrics and gynaecology in the Top End has been the Specialist Outreach Service. Single-handedly, Dr Margaret O’Brien has revolutionised care for women in the communities as she travels with her ultrasound machine and her colposcope. This service also means that women have continuity of care and when a woman has cancer or suspected cancer, they are already given support and information without the distress of travel often by plane.
“In one of the communities, we have found a much higher incidence of both cervical and vulvar cancers than we would expect and also in younger women. We talked with the health workers about this and they organised that Margaret and I should visit the community. The plan was for a day of education and colposcopy. Women, who in many cases were already seeing me, were invited to come and bring their relations for a women’s health check-up. A feast of barramundi was put on and the response was fantastic. Not much happened in the morning, but after lunch, we found that we saw 17 relations, many of whom only came because of peer pressure. We found three new precancerous lesions. None of these women would ever have travelled to Darwin, so the lesson is that we should keep an open mind to suggestions which may produce unexpected positive results.
“A tribal woman was bleeding from an advanced cervical cancer. She was seen and advised that she would need six weeks radiation therapy in Adelaide. She was not willing to come into Darwin, let alone Adelaide and it was July and cold down south. She continued to bleed and was seen a couple of times. At the last consultation, she was offered a “short course” of radiation. This was not the text book approach, but has been shown to provide good palliation, with improved quality of life. She accepted this and spent one week in Adelaide. She has returned to her community, with no bleeding and no smelly discharge.”
For the first few years I was concerned that I was the “hired knife” and did not really feel that I got to know any of my patients in the way I do with my patients in Adelaide, with a feeling for their psychosocial requirements. I felt that I had reached a new level, when I was first greeted at the hospital outside in the atrium before the consultation as I arrived.
The lesson I have learned is that by consistently coming and offering continuity of service, I am now trusted. Frequently now, I hear “you looked after my aunty or sister”, so I hope that makes my advice and treatment accepted more readily.
There are problems which need to be worked on with the Aboriginal communities. For example, there are quite a few cases where people do not keep appointments, not only consultations, but when booked for surgery the next day they do not come, which denies the slot to another patient. There may be cultural and other reasons which stop our patients from attending, in which case we need help understanding how to manage these to best utilise limited resources.
Radiation can be used to cure tumours, preserve organ function such as laryngeal function, prevent recurrence or palliate by relieving pain. In patients treated for cure radiotherapy is utilised in 28 per cent of cases.3 It has been shown that Indigenous people need radiation more than the non-Indigenous population because of the mix of tumour types that they have. One difficulty, however, is that the linear accelerators are not portable and because of the staffing infrastructure and population density are situated in major cities. Even radiotherapy opinions can be difficult to obtain from remote areas.
A major problem for Aboriginal patients is whether they are being referred adequately for radiotherapy. When referred they often need to travel long distances from home and have difficulties in adjusting to treatment. There are often problems with travel restrictions on escorts. Differences from home often include the language, the climate, the uncertainty of negotiating multi-story buildings and what support is available for weekends off treatment. Aboriginal people often have duties in their own country that cannot be deferred and will interrupt a course of radiotherapy. Our travel and support services do not accommodate their need for flexible travel. Added to that are the special cultural difficulties if very sick patients die away from home, or patients sent home post radiation who develop subsequent side effects from the therapy.
These cases illustrate issues of communication and the culturally driven differences in decision-making, which impact on the delivery and outcomes of medical care to Aboriginal and Torres Strait Islander communities. The way forward requires recognition of the differences, sensitivity to those differences and a dialogue to plan the way forward. We need to listen better to Aboriginal patients and their families and advocates, and work with Aboriginal colleagues who can complement the things we know with other things that they know.