Ensuring a dignified and culturally safe death: in a small Northland community, everything possible was done to ensure a family could care for their loved one safely at home during her final days.
Terminal care (Methods)
Terminal care (Management)
|Publication:||Name: Kai Tiaki: Nursing New Zealand Publisher: New Zealand Nurses' Organisation Audience: Trade Format: Magazine/Journal Subject: Health; Health care industry Copyright: COPYRIGHT 2011 New Zealand Nurses' Organisation ISSN: 1173-2032|
|Issue:||Date: May, 2011 Source Volume: 17 Source Issue: 4|
|Topic:||Event Code: 360 Services information; 200 Management dynamics Computer Subject: Company business management|
|Product:||Product Code: 8043100 Nurses NAICS Code: 621399 Offices of All Other Miscellaneous Health Practitioners|
|Geographic:||Geographic Scope: New Zealand Geographic Code: 8NEWZ New Zealand|
I am of Te Roroa descent and have worked in health for more than 40
years. At times it is very hard separating my professional from my
private life. Having been born and bred in the Hokianga, the two are
often irrevocably entwined. I realised early in my nursing career that
nursing would never be an 8am to 5pm job nor confined to a specific
nursing role, due to my living and working in this rural area.
This exemplar demonstrates the four elements of the Whare Tapa Wha model of health, ie taha wairua (the spiritual side), taha hinengaro (thoughts and feelings), taha tinana (the physical side) and taha whanau (family) (1). This is outlined in the diagram on p15. (2) These four dimensions are represented by the four walls, of a house, or wharenui. Each wall is critical to the strength and symmetry of the building, just as each dimension of well-being must be in harmony for health to exist.
The exemplar also indicates the importance of Te Tiriti o Waitangi to health professionals, as the four articles of te tiriti show how this model of health can be implemented (see explanation, p16.) (3) The exemplar shows the partnership between health professionals and whanau during the care given to the client, their family and extended family, both in hospital and at home.
Kate goes home to the care of her family
* Kate was an 89-year-old lady who had had one of her legs amputated as a result of diabetic neuropathy. Recently, Kate's health had deteriorated to the point where she was admitted to our local hospital with end-stage renal and heart failure.
Kate had a large and caring family who had been assisting her maintain her independence at home until her condition worsened. As is most often the way, when Maori are faced with a major health concern, it is culturally appropriate for them to remain with their loved one when that person is seriously ill. The whanau and extended whanau tend to gather together during these times, so they can support and give strength to each other (4) This concept is highlighted in article two of te tiriti, which states that Maori are entitled to reserve their rights to care for things they value as taonga/treasures.3 Besides land and fisheries, Maori consider family as part of that taonga (1).
On admission to hospital, Kate's family voiced their beliefs (tikanga) to the staff nurse on duty. Although the nurse was Pakeha, she respected the family's values, recognising they would need a room big enough to allow the family to stay together. This would enable them to maintain their mana and have control over Kate's care while she was in hospital. The family expressed a wish to be informed about their mother's condition and wanted an idea on approximately how long Kate had left with them.
The next day, after the doctor had re-assessed Kate, it was obvious no more could be done for her. He asked if he could speak with the two family elders. He told them Kate was dying. The kaumatua understood that plans had to be made about what the family wanted to do.
Unfortunately, renovations to the hospital room where the family was staying were due to begin in two days' time and there was no other room available that could accommodate Kate and her family. The doctor asked to see the clinical services manager to discuss what options were available, plus what the family wanted/expected from the hospital in the way of care for their mother.
The family decided their preferred option was to take Kate home and care for her there. Kate's eldest daughter * Peri asked if I would help look after their mum at her home. Several years ago, Kate's two teenage mokopuna were dying from chronic illnesses and I was with the family then. The girls' deaths occurred within two years of each other and they were cared for at Kate's home when they became terminal. Over that time, the family, extended family and I developed a "special relationship", in which I felt part of their whanau and still do. During that time, the family looked to me for nursing guidance and help when a health problem arose. I felt honoured to be asked to help Kate and her whanau again.
When the decision was made to take Kate home, all the supports had to be in place to make this transition as stress-free as possible for all concerned. My manager agreed I could support the family outside my working hours (our service's kaupapa supported this), though this would be regarded as voluntary work. I work in the accident and emergency centre and GP practice at our local hospital, and not in the wards. But it was still possible for me to work alongside the staff nurse, the community health nurse and service manager to help organise the nursing necessities in this short space of time.
Setting up support systems
I needed to gather data from both a medical and family perspective^ This information would make it easier for the family to help care for Kate at home. Planning and implementation were based on Kate's and the family's immediate needs. Referrals were made to appropriate services and other members of the multidisciplinary team. Everything went smoothly, with all services in place before Kate left the hospital. This was due to open and clear communication between the family and the three nurses. A hospital bed was sent to the house and Kate went home by ambulance.
Before leaving the hospital, Kate was beginning to lose consciousness. The family and those staff present held karakia just before Kate went home. I agreed to visit them after work. I made it clear that my work at the hospital would always come first but I reassured them my time would be devoted to them after my shift was finished. This could only happen with the support of my family.
Caring for Kate under these circumstances was new to the family and so altered the way they normally functioned (5). Peri needed education about her mother's drug therapy. She was shown the correct procedures for care and what to watch for regarding the subcutaneous needle site in case of infiltration and phlebitis or the dislodging of the needle. She was also shown how to monitor the normal saline, which was running very slowly to help keep Kate hydrated. She was also educated on how to monitor the level of drugs being administered, the site and patency of the syringe driver, and the alarms, lights and what to do if there were any concerns, even though a nurse would call in daily. Peri also discussed with the staff nurse the different drugs the syringe driver held, their effects and possible reactions to the drugs.
Intravenous or subcutaneous fluids?
Kate's family and I kept in regular touch with her doctor and the community health nurse. The family had a list of people they could contact if needed. They were fully informed of the medical/ nursing choices they had in relation to Kate's care. One of those choices was to have intravenous (IV) or subcutaneous fluids in place, running very slowly, to prevent dehydration. Kate was suffering from severe dysphagia. However, Kate's grandchildren wanted everything possible done to keep their Nana alive. They wanted her to be given intravenous rather than subcutaneous fluids. The kaumatua made the final decision that Kate should receive subcutaneous fluids. Medicines were given for pain relief, to help with nausea and restlessness. Although the family was very caring and would do all they could, they were still very nervous about what was expected of them. However, they were relieved when they knew I would be with them after work. My stance on these occasions is to be guided by what the family wants.
I stayed with the family the first night Kate went home and thereafter called in after work. I would wait until the family had had karakia and Kate was settled. I would then go home to prepare and rest for my work the next day, even if it was only for three or four hours.
Late one night a family member phoned me at home and asked me to come to the house, as Kate seemed to be restless and in pain. I asked if the pump was working. I was told the light was still clicking on and off, but the fluid was still at the same place. I was asked to come and have a look at it. When I arrived, it appeared the syringe was not set in place properly and had not been advancing the medication. Kate seemed to be in pain and was very restless and agitated. I was unsure what to do, as I realised she had been without the medication for several hours.
Te Whare Tapa Wha model of health (2)
The doctor was contacted and he advised a dose of IV morphine 2.5mgs. This was to be repeated in 2.5mg increments until Kate was pain free.
I felt uncomfortable doing the procedure, as I was with the family in a volunteer capacity and was unsure of my legal status. I told the doctor of my fears. He said he would come to the house and do it himself. He was there within 20 minutes.
The night before Kate died, I called at the house on my way home. Kate was very peaceful, but it was evident the end was nearing. Although she was resting peacefully, her extremities were beginning to mottle and the tips of her toes were quite purple. The kaumatua were informed. I told them I needed to go home for the evening but would come back after my visitors had gone. I wanted to stay with the family but I had a meeting at my house that could not be put off. After it had finished, I went back to the family. It was now 11pm on a Friday, so thankfully no work for me the next morning. Looking at Kate, it was apparent she was slipping away quite quickly. Her toes were completely cyanosed, her breathing very shallow and her pulse erratic and faint.
A time to say goodbye
At 2am, after I had a korero with the kaumatua, we agreed it was time for them to call the rest of the family in to say goodbye to their mum and nana. I wondered if I had done the right thing actioning this. From past experience, I knew that sometimes a person could stay in this state for hours or days. However, my rationale was that there were about 40 family members scattered around the house, in tents and cars outside, and next door at Kate's son's house. I thought they all might like to say goodbye and have a service while Kate was still with us. This is exactly what they did. They sang and sang and talked about the good, bad and funny things of their lives with her. They laughed and joked and cried for at least another hour. Finally, when everyone had gone out of the room, we settled Kate and I said my own goodbyes to her at 3.30am. I suspected this was going to be the last time I would see her alive. The family was happy for me to go home because they could see that Kate was very peaceful and comfortable.
A few hours later, the phone rang at 7am. Kate had passed away quietly, not long after I had left. The family had notified the hospital and contacted the undertakers. Her children, sister and granddaughters had slept next to her. I was hesitant about going back to the house at this time, in case the family wanted to be left alone. In the end, I decided to go out to the family to help where possible, eg removing the syringe driver for safety reasons, and seeing what else they might like me to do. Arriving at Kate's place, I found the family waiting for me. I did my rounds of kisses and cuddles and then went in to pay my respects to Kate. She was washed and dressed in preparation for the manuhiri and her journey to the undertaker's.
Rituals when tending the deceased
Maori protocol, passed down through the generations, has certain rituals carried out according to the laws of tapu (sacredness) and noa (free from tapu/blessing). These laws become even more sacred when someone dies. (4) There are also certain principles regarding tikanga Maori that need to be acknowledged when tending the deceased. These principles were clearly demonstrated when the women washed and prepared Kate for her journey to the undertaker's. For example, separate buckets of water were used for her face and another for her body, accompanied by separate towels.
I usually stand in the background while the family clean and wash the deceased, unless asked to assist. During this special time, I see my role as encouraging the family to treat that person as if s/he was still alive, with the dignity and respect they deserve, ensuring their body is not exposed unnecessarily when washing or turning. The carers are encouraged to talk to the deceased, explaining what they are doing and when they are going to turn them to wash their back, which way they are going to turn them and so on. When Kate's wash had been completed, the family wrapped up her hairbrush and comb, as they wanted these personal things to go with her. Any items used to care for the head are deemed sacred, even more so when the person has died. The head is the home of the human mind and we need to protect it. (4)
Blessing the laundry
As Kate was already washed and prepared for the manuhiri, I asked the minister to bless the dirty laundry so it could be washed. Blessing the clothes and linen used by the deceased is one of those rituals carried out according to the laws of tapu and noa. This custom refers not only to physical cleanliness but also to spiritual cleanliness. Certain practices need to be performed to ensure the family are protected and safe, so no evil occurs at a later date. After the clothes are washed, they can then be brought back into normal use or buried with the deceased.,
The family and I had prayers and a little service with Kate. By this time, manuhiri were arriving and it was time for me to go home. I had stayed with this family and had supported them in their time of need. It was now time for me to bow out. The family were left to make the arrangements they needed to make.
Reflecting on Kate's care
As I reflected on all of this, I felt confident everything had been done to help this family. I don't believe I overstepped my boundaries as a registered nurse. I was reluctant to administer the IV morphine at home, as I felt this was beyond my jurisdiction. It was safer not to do anything that could jeopardise me professionally.
During the time Kate was being cared for at home, the family had meetings before breakfast to discuss any issues and to delegate jobs for the day; they also met again each evening before karakia. I was always asked to join them. It was at these times I could answer any questions. If I was unsure of the answer, I would either find out or direct the family to the appropriate person(s).
For me, this was also an emotional time. I believe my actions helped facilitate a peaceful and graceful death for Kate. Her family had the opportunity to say their goodbyes while she was still alive; they had time to have a service with her, time to sing and to reminisce about the good times and what Kate meant to them throughout their lives.
I empathised with the family and could understand what they were experiencing. It was also in such stark contrast to the experience I went through when my own mother died several years ago. Since then, all my energy has been put into ensuring that my knowledge is updated regularly, so families can be fully informed of all options available to help make each person's death as comfortable and peaceful as possible. I knew I had done exactly that with Kate and felt good about it. My nursing philosophy was fulfilled through the partnership formed between me, Kate and her family and I was able to practise what I believed in, ie Te Whare Tapa Wha model of health. (1) This exemplar is also a reminder of how important it is that health professionals understand the relationship between the Treaty of Waitangi and health.
This experience enhanced my life as a nurse and as a human being. It was a privilege to work alongside this family at such an intimate time in their lives and within my own community. The lessons learned have been invaluable.
TE TIRITI 0 WAITANGI
Article One: Maori agreed in 1840 that the British Crown had the right of kawanatanga/ governorship over their land. Rather than ceding sovereignty, Maori believed they kept their authority to manage their own affairs.3 The signing of the Te Tiriti o Waitangi was between both Maori and non-Maori. Colonial rule eventually became the dominant feature of New Zealand society. Kate's care, both in hospital and at home, demonstrated partnership between two cultures.
Article Two: Maori were entitled to reserve their rights to care for things they valued as taonga/treasures. In this instance, Kate was the taonga needing care.
Article Three: Maori were guaranteed full rights and privileges, the same as those given to British subjects. This gave everyone, including Kate, all the benefits of living in New Zealand.
Article Four: The unspoken article, giving Maori religious freedom. This was apparent when the family had a small service in the hospital room before they took Kate home.
(1) Durie, M. (1998) Whaiora: Maori Health Development (2nd ed) Oxford University Press: New Zealand.
(2) Career Services. (2011) 7e Whore Tapa Who. www2.careers.govt.nz/fileadmin/irriage/rte/te-whare-tapa-wha-full.png. Retrieved 11/04/2011.
(3) Ministry for Culture and Heritage. www.nzhistory.net.nz/politics/treaty/read-the-Treaty/ differences-between-trie- texts. Updated 18/04/2007. Retrieved 05/05/2011.
(4) The Paua Team NZNO. (2005) Te Rourouka Ko Ora Ai. The Sustaining Basket. Wellington Press: New Zealand.
(5) Jarvis, C. (2008) Physical examination & health assessment (5th ed). St. Louis, Missouri: Saunders.
* Not the client's nor her daughter's real names. Kate's eldest daughter has approved publication of this exemplar.
This article was reviewed by Kai Tiaki Nursing New Zealand'spracft'ce article review committee in November last year.
Venus Cherrington, RN, is a practice nurse and co-ordinator of the accident and emergency centre and GP practice at the Hokianga Health Enterprise Trust in the Hokianga. She is also an NZNO delegate for Hauora Hokianga.
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