Providing Palliative Care to Māori
Full colour PDF of ‘Providing Palliative Care to Māori’ January 2006.
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Māori comprise 15% of the NZ population. Analysis of mortality data have shown the gap between Māori and non-Māori has increased from six and a half years in the early 1980’s to ten years in the late 1990’s.
The Ministry of Health Palliative Care strategy identifies providing palliative care at home as a key feature of palliative care services for Māori. It follows that general practice has an extremely important role to play in meeting Māori palliative care needs. Dying at home is not unique to Māori of course; however it is often overlooked in service design.
It is helpful to start from the position that all human cultures embrace compassion. While beliefs and values show complex cultural variance, compassionate care is universally respected. The key to providing compassionate care is to be regardful of the beliefs and values the individual and their family has with respect to death and dying.
The objective of palliative care is to alleviate suffering and provide compassionate care for the patient and their family. Competence in palliative medicine and sensitivity to people’s beliefs and values are two key prerequisites. It is suggested GP’s form a care plan with a view to ensuring that pain and other potentially distressing symptoms are relieved, dignity is preserved and there is engagement with family and whānau.
For several months the whānau had noticed their Koro (old man) was spending long periods in the whare paku (toilet). When the whānau asked how he was Koro always replied he was ‘Well’. The whānau became concerned when they noticed he was reciting karakia (prayers), chanting and talking with his tipuna (those that had passed). The eldest daughter approached their Koro....“What’s wrong?” “NOTHING!... I’ve just got blood coming out of me when I have a tutae (bowel motion)”
“We need to see the doctor” said his daughter.
The appointment with the doctor was a week and a half away. Koro began to withdraw and the whānau could see he was deteriorating.
When they arrived at the surgery the receptionist greeted Mr. Kohinga. “Good afternoon, while you are waiting to see the doctor can I get you to complete these forms, you need to enroll. Mr. Kohinga shook his head and sighed. The receptionist began to explain that he had to fill out the forms before he could see the doctor. When the daughter caught her eye, she paused for a moment “I’m good with forms Pāpā”, said the daughter “let’s fill them out together”. “Thanks” said the receptionist smiling at the daughter.
They completed the forms and returned them to the receptionist. The receptionist took the forms and noticing a gap went to call out to Mr. Kohinga but hesitated, unsure how to pronounce his name. “Excuse me”, she called out making eye contact with the daughter. The daughter approached the counter. The receptionist explained rather sheepishly “I’m sorry but I can’t pronounce your fathers name, could you tell me how to say this correctly?” The daughter smiled and replied “sure, Ko- as in ‘core’, hing- rhymes with ‘sing’ and ‘a’ said as ‘are’, Kohinga said in English as ‘core-hing-are’. The receptionist was relieved and wrote the translation on the top of the forms.
After a short wait Mr. Kohinga and his daughter were called into the doctors consulting room. The doctor read the translation at the top of the page “Mr Kohinga …welcome, how are you?” the doctor greeted them.
“I have bought my daughter with me, two sets of ears are better than one” chuckled Mr. Kohinga.
“So what brings you here today?” the doctor looking at them both.
“Do you want me to tell the doctor what we have noticed with you lately Pāpā?”
“Ae” said Mr. Kohinga nodding at his daughter.
The daughter explained to the Dr “Our father has been passing blood from his back passage for several months; we’ve noticed his colour is very poor, he seems to have lost lots of weight. He’s also not doing much – he’s usually so active we’re really worried”
The doctor asked a number of questions which neither Mr. Kohinga nor his daughter seemed to understand and he began to feel frustrated. Then he paused. He was looking for information that would give a clearer ‘picture’ of out of character cues. He looked at the both of them and asked “Is there anything else you can tell me that would help me understand the degree of anxiety you and the family have?”
“Yes” said the daughter. ‘We became really worried when we heard him reciting karakia and talking to our mother who died 30 years ago”.
“Why are you concerned about that?” the doctor asked.
“Karakia is like praying and we have heard him saying that he will join our mother soon. We think he wants to die.” Dr Smith paused and looked at Mr. Kohinga “Mr. Kohinga, how do you feel about this?”
“I’m old, I know my time has come, and I want to spend what’s left of it with my whānau – not in some hospital!”
The GP was concerned about what he heard. His knowledge of Māori cultural conventions (Tikānga) on death and dying was pretty limited and he was briefly uncertain about how to proceed with Mr. Kohinga. “Mr. Kohinga I think we shouldn’t jump to conclusions about what is causing your symptoms. Can I suggest that the first thing we should do is to find out what’s going on. To help do this I’d like you to have a procedure called a colonoscopy. It’ll show where the bleeding is coming from” and Doctor Smith then went on to explain the procedure. The daughter looked at her father “sounds like a good idea to me Pāpā – might have you round a bit longer than you think!” Mr. Kohinga appeared unconvinced. The daughter continued “let’s talk about it with the whānau – maybe they can change your mind? At this point Dr Smith suggested he could make an appointment for Mr. Kohinga as there may be a delay in getting the colonoscopy done anyway and if they didn’t wish to proceed then he could easily cancel it. Mr. Kohinga slowly nodded his head.
As they got up to leave the daughter said to the doctor she would talk to her father about the importance of the colonoscopy and try to get the whānau on board “I only hope I can explain it well enough to them”
“Well you’re welcome to make another appointment to bring the whānau along – I’d be happy to discuss things with them – as long as Mr. Kohinga is ok with that of course?
“Thanks, we might just do that”.
|Pause||Be aware of how your own cultural outlook impacts on the consultation.|
|Ask||Don’t be afraid to ask - you’re not expected to be an expert on everything.|
|Act||Give the patient and the family the information and support they need to actively participate in the management of their own health issue.|
|‘Pause’||Be aware of how your own cultural outlook might impact on the interaction with the patient|
The cultural backgrounds of clinicians and patients strongly influence their values and beliefs. These can become so entrenched that they feel intrinsically ‘right’. Differences in viewpoint across the clinician-patient relationship can lead to misunderstanding, discomfort, non-cooperation and a lack of trust.
Core issues which have potential for cross-cultural misunderstandings include those relating to:
- physical contact
- communication styles
- gender, sexuality, and family
|‘Ask’||Don’t be afraid to ask – you’re not expected to be an expert on everything|
Seeing the health issue through the patient’s eyes is the key to patient-centred medicine. It is especially important in cross-cultural consultations as there are increased opportunities for misconceptions and misunderstandings.
The best way to gain an understanding of the way each individual patient sees the situation is to ask open questions. It is very unlikely that a patient would be offended if you were to ask them to give you more information on specific cultural conventions e.g. tikānga of death and dying.
Issues to be explored include the:
- patient’s beliefs about the illness and expectations for the future
- spiritual, social, emotional and physical effects of the illness
- patient’s usual social and health supports
|‘Act’||Create the opportunity for patients to actively participate in the management of their own health|
Enabling people to participate in the management of their own or their whānau health issues does not necessarily mean passing over decision making. It is more likely to include encouraging and supporting people to:
- Ask questions
- Formulate the problem
- Set goals
- Choose between management options
- Exercise control over various interventions
The degree with which people want to participate in the management of their health issues varies from person to person. People may prefer a family member to take on this active role. In some cultures this is a close male family member, in others an elder female.
In Māori culture with its tradition of collective responsibility and decision making the whole whānau may be involved. This concept is often referred to as a ‘Whānau-centered approach’.
General practice can actively encourage the patient and whānau to be involved in all aspects of health care and decision-making. The patient may nominate a person to speak on their behalf. A Māori Health provider may be a useful member of the healthcare team.
Questions that enable involvement are:
- Is there anything you want to ask?
- This is my understanding so far - is their anything you would like to add?
- What would you like to see happen from here?
- These are the options as I see them. What do you think?
- How would you like us to go about that?
General Practitioner Dr Paratene Ngata has described Māori perceptions of death and dying as follows.
‘Perceptions of death, illness, grieving and healing are all centered on the notions of unity, harmony and balance.
Tangi… provides a culturally safe environment for the free, open and shared expression of grief and sorrow, helping recovery of whānau strength after the… burial. The physical coldness and isolation of the hospital mortuary is contrary to Māori views that the deceased must be kept constantly warm and comfortable by the presence of kinfolk, in order to calm the soul and assist it on its journey to the spirit world. Delays in returning the body to the whānau seriously disrupt customary grieving practices.’ (Scwhass, 2005)
When providing palliative care for Māori it is essential to see things through the patient’s eyes. This includes understanding cultural influences on the pathway of death, acknowledging the strengths and resources of whānau and taking the time to understand what is important to your patient.
We have suggested a way of doing things which may feel uncomfortable at first.
However clinicians who adopt this ‘Pause, Ask and Act’ approach to cross-cultural consultations can expect an improvement in the interaction with patients and their families.
Schwass, M. (2005). last Words - Approaches to death. Wellington: Bridgot Williams Books.
For further information
The Process of Maori mourning and grief at the time of death
Religious Needs of Patients in Sickness Dying and Death http://www.wsahs.nsw.gov.au/services/pastoralcare/relneeds.htm