I want to know what happened with my sister ?
Nivedita was having fluctuating high temperatures for 3 – 4 months in 2014. She had some groin pain in December 2014 which was settled by visit to Whitecross New Lynn. Her Sept 2014 blood results were normal as per commented by Nivedita’s current GP (contrary to Nivedita’s first day at Auckland City Hospital where it was commented that her Sept Blood report had abnormalities). On 23rd of January Nivedita went to New Lynn’s Whitecross with severe headache and high temperature and was advised to do a blood test as they suspected malaria as she had recently returned from India. She did the test on the Saturday morning 24th of January. Then on January 27th 2015 she was asked to go to the hospital to get checked by the white cross as suspected Leukemia. When she went to hospital she called my husband Timothy Tracey saying that she might be having suspected Leukaemia. She was given IV as per text send to Timothy at 6 p.m. She was discharged that night with a prescription of paracetamol and asked to come for 3 days at the day stay unit for treatment. They also said that they would be doing her bone marrow biopsy on the 28th of Jan (next day). I spoke to the nurse there expressing my concern of Nivedita having to travel from New lynn to Auckland City everyday and suggested that they admit her. However, the nurse said that since the support worker had gone home for the day I should support to get to the hospital the next morning and she would make arrangements with the support worker the next day.
The next day my sister took herself to the hospital by taxi and instead of bone marrow biopsy was given a blood transfusion. She informed us when we went to collect her that she was in the Bone Marrow Unit Motatapu Ward and that during biopsy there is possibility of blood loss hence before the test they have to do transfusion. She was asked to stay overnight. She had a high temperature.
The next day 29th Jan they did her biopsy which was scheduled for 10 am but only happened around 12 ish as witnessed by myself Jayshree Das-Tracey as my sister had an acute phobia of needles I went as her support person. There were 5/6 attempts made by two doctors one of them was Su Ann and the other was a doctor of Asian descent too, in the hip and back to get to the bone. Several times the person assisting the doctors with the equipment was required make several trips as the doctors were trying with every size, shape and length needles. However, when it didn’t work they called the consultant Nicole from the lab and she did it through the sternum. After a few minutes she was transferred to the ward where she rested. Then, my sister asked for some food and ate a hearty lunch with me. Soon Dr Patton came and confirmed that it is Leukaemia (AML) and it was treatable and curable. He added, “They would be starting with chemo the next day and that they would be also doing some chromosome test to understand her type cancer better”. She had a high temperature that night too. I stayed for a long time with her till my husband and son came from work and school respectively.
On the 30th of Jan.I got a text from her saying that she had peed all over her bed the night before @ 6.24 am. Then Nivedita texted @ 8.37 AM saying “that doctors were going to put in a central line mostly today. They have changed my medications as it was not as severe as they were thinking”. Then, another text saying,” I am going for an ultra sound for her leg too...@ 9.03 am. . I texted her again at 1.59 pm, 4.45and 5.29 asking her how she was but got no reply. Then, at 5.40 pm I got a text from her, “Sorry been very groggy...You come here...don’t have strength to talk much.” By then I had reached the hospital just in time to accompany her for the Ultra sound. The Dr who did the scan said that it was not something he is worried about as nothing needed to be drained from her leg..
On the 31st of Jan I went to see her at 2 prior to which I had send two texts with no replies from her. She had a few visitors that day. She was going to the toilet again and again and couldn’t control her bowels. I stayed with her and they decided to move her to her own room as she her bowels were uncontrollable. She was breathing heavy and the nurse told us that it might be having pneumonia.
ON the 1st of Feb she texted me saying that “she had a rough night, but was slightly better what time will you come”. She asked me, “Can you get my thick comb and a hair tie for my hair. It’s in my first dresser drawer. I replied to her that I would come to see her just after 2. She replied Yep get nail klippers. I went to see her around 12ish. She continued to talk me but was very weak and unable to talk a lot. By that evening she also had an oxygen tube put in her as she was wheezing. That evening we spoke to a doctor of African descent who advised us to write a note to Dr or whoever was looking after Nivedita to make a time so that they could see us. We expressed our concern that due to we both holding full time jobs and having a 6 year old to look after and being the only family there was no one available to sit by her bedside. So I wrote the note and gave it to my sister to give it to the Doctor.
On the 2nd of Feb she was moved to the equaliser room as she needed more oxygen and was suspected with TB. Nivedita texted me saying that’ got a cathode in me now’. That night a new lady doctor did her Oxygen level testing through 4 attempts and finally getting it right.
The Drs never gave us any further information as to how far she was advanced. They kept treating her, but we never got to speak to any of the Drs inspite repeated request. As we would there in the evening the ward Dr would say that he hadn’t read her reports and couldn’t tell us much. We only got to speak to different nurses who didn’t really give us an update of what was happening.
On the 3th of Feb my husband received a phone call that Nivedita was going to be shifted to the Intensive Care because they couldn’t administer certain medicines in the bone marrow transplant unit and also due to the oxygen requirements. She was shifted around mid morning and we were told by a nurse from the ICU that by 12noon the doctors would come and see us. NO one came and around we waited and waited till my husband got frustrated as he had to go to pick up our 6 year old and also collect her belongings from the Motatapu Ward. He went upstairs between 4.30 -5.00pm and told the charge nurse that it was not ok not hearing anything from anyone as to how she was doing in the ICU. Then, within 5 mins we were called in to see Nivedita and then Dr spoke to my husband saying she very sick. My husband asked again how sick are we talking. To which he replied, “She is very sick.”
I stayed by my sister’s side and would occasionally go out for some errands or natures call.
Then, that evening one of the Dr suggested to us that she be put into induced coma to give her organs a rest as she her kidneys were not working. Doing a dialysis was painful and hence it would be a good idea to intubate. No one told us that she might not be able to wake up from it. They said that she would be sedated enough that she can hear us and can be brought out of it once her kidneys functioned. We went to say bye to my sister and and cheer her up. She was quite awake and was joking with the nurses who came to do her Chemo. She also told one of our friends that she was looking forward to eating rice and fish once she was in the ward upstairs all better. We went home that day and called and spoke to Nurse Ventry (Victory) who said that she was resting peaceful and all was good.
The next day 4th of February we went to the hospital and stayed there going in out several times. Not once did Nurse Katy say that Nivedita was really serious and was deteriorating. IN the evening myself and my husband went in at 6 , 6.30. 7.00, 7.45 and then 8 pm before we left the hospital. The dialysis machine was shut because they had to change the filter before they could put it back on was told to us, which was at 7 pm. We left her at 8 and as per normal called in at 10 and were told to call back after 45 mins, as the nurse was busy with Nivedita. Then at 10.45 called again, were told that Doctors are doing their rounds, my husband said why didn’t you tell me earlier, bollicks I ll complain. The nurse replied, “this isn’t bollicks and if you want to complaint we’ll do so,go ahead” and basically didn’t want to talk any further. Then, just after midnight we received a call saying that she was serious and we need to come to see her. Then, Dr called us into the room and said,” She has not woken up from her induced coma. We have tried everything. “She is very sick, she will not make it. She will not live till the morning. Leukaemia Patients who come to Intensive Care very rarely make it out alive. She has been deteriorating since 6 last night. I said, “I was here till 8, nobody told me this. I came in at 6 to see her, then my husband at 6.30, then at 7, then at 7.45 and finally at 8. Nobody told me she was critical.”
The nurse in my sisters room said, she is fighting so we have paralysed her. We watched for two hours in horror as life slowly left Nivedita. Her most beloved 6 year old nephew was by her bed side trying very hard to revive her. It was heart wrenching and something no body should be subject to. Nivedita left us on the 5th of February, 2015.
When I got upset and verbal by saying that I would go to the press as I was not told how critical she was the nurse in charge told my husband that we would be escorted off the premises if we issue anymore threats. They even called a short and stout person to stand by the meeting room. I had not abused or confronted anyone with any threat of going to the press. I just said it while walking out of her room in grief. The stout guy was constantly eye balling me. I felt threaten and scared at the intimidating manner. Later, a couple of papers were thrust in our hands regarding making complaints.
Throught out this whole time no one came up for support, counselling, guidance inspite of asking for help. Nivedita went into induced coma without knowing she was never going to wake up.
After her death we were not told what needs to be done next. No one stood next to us to console, counsel or tell us what needs to happen. No one even bothered to ask us about any special requirements due to cultural practice on how to prepare the body. So when my husband asked what needed to be done, “ they said we can get you yellow pages.” Tim’s reply was at 3.30 you are kidding me to call an undertaker.
When Tim my husband went to find out how to collect the body. There was nobody there. He waited outside her door. The body was covered and lay in the room and was visible from the outside glass door, there was no privacy. The nurse said that the body cannot be shifted into the morgue those rooms are for the coroner. Upon which my husband replied that we had just visited the morgue a few weeks ago when a family friend’s body had been kept for the whanau to visit. My husband asked the nurse to check and she came back saying that the body could not be kept in the morgue.
All this time we were sitting in a meeting room as there was no place to grieve or sit and take account of the situation.
My GP rang me at 9 am and I gave her details, she said she would ring the Bone Marrow ward and find out. A few minutes later she rang and said the Dr responsible for my sister from the bone marrow ward would come and see me. My sister died around 3ish, the GP called the ward at 9 and the Dr only came to see us at 11.00. He came with two females who didn’t introduce themselves but were very patronizing.
After a very polite conversation with the Dr who advised us the DCM doctor’s team are were ready to meet us provided we went and approached them. We had been sitting in that room since 3 am checking now and then on my sister’s body and no one had come to us with anything till 11 when Dr came to see us. He apologized saying that there was miscommunication with us and he had been on holiday for two days. He also gave us examples of two other patients who had diagnosed with leukaemia one in their 20’s and one similar to Nivedita and were induced into coma for dialysis. My husband got up to shake his hand as per customary but Dr left us without a hand shake or anything just turning his back on us, which my husband found very insulting and degrading. The other two ladies with him did the same.
We received the death certificate which stated that she died from multiple organ failure, leukaemia, septicaemia and obesity. We were also not asked if we needed to do an autopsy thought it was ticked off by the Dr who wrote the death certificate. Also, my sister was a donor and that too was not asked from us and we were in a state of shock at that stage to think of anything else.
We wish for the following issues to be investigated and followed up:-
• At what stage did she get septicaemia as we were informed of only an infection?
• Per the Discharge summary to our GP was she treated for pneumonia, legionnaire’s disease, and TB or lung infection?
• Was her left lung collapsed as per stated and why were we not told?
• Why was not one of us present when the disclaimer for being induced was read out to her?
• Was she put on support or life support at the time of her death, if so why were we not given the right to turn off her life support?
• There is no communication between the Bone Marrow unit and the DCCM which became clear and prevalent when trying to communicate with them?
• At one stage my husband went to look for someone to talk about the whether an autopsy was going to be done to re arrange a Hindu funeral, to which an elderly staff member approached and said can we help. She went away and asked whoever and came back saying, “no autopsy required’. However in the form it reads if autopsy was requested and the Doctor has ticked no. We were never asked if we wanted to do an autopsy.
• The manner and the tone in which the Indian nurse replied to our phone call on the night of the 4th at approx 11pm was unacceptable. The charge nurse later did try to explain the situation by identifying the lack of funding to have a telephone operator on in the night being the reason for the nurse’s frustration.
• Cultural insensitivity and no questions asked as what would be culturally appropriate for the dead person
• Why there are only the yellow pages available to phone funeral directors why is not there a pamphlet broken down into ethnicities for individual nationalities.
• Why is there no whanau room in the ICu
• Why was my sisters body not allowed to be kept in the morgue
• Why was the dead body visible from outside for 8 hours
• Why the staff in the ICU are ill equipped to deal with grief and see every action as been a threat so much so that they in turn threaten to throw grieving relatives out of the hospital and use physical intimidation.
• Dr lack of sensitivity and insulting manner is very appalling. For a man of his stature within the medical society is really shameful.
• Why did the HDU management not approach us while we were sitting to claim the body?
• Why the patient was not being honest to. Nivedita died with the understanding that she was induced into a coma for her organs to be given a respite.
• As a Hindu if we know when someone is dying we have a ritual of putting the water from the Ganges in their mouth. When we received the phone call that evening we were not told that she was dying so we didn’t bring any water. Why this kind of cultural insensitivity?
• When I asked to read her medical records I was told that I would have to prove my relationship with her and fill up some forms by a nurse. I am her only next of kin and she had made everyone aware of that. So why this stress for me?
I look forward to you addressing the above issues on behalf of the deceased Ms Nivedita Das and her devastated whanau. We hope and pray that no one should be subject to such in humane, degrading and unethical treatment of the patient and family.
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