New Zealand Hospital Crisis

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Letter to the Director of Medical Services at Nelson Hospital

The following letter to the Director of Medical Services at the Nelson Hospital was written by Colleen De Valera's daughter, Su Wyatt. 

After reading, please click here to see the hospital's response to this letter, and Su Wyatt's reply.

July 2, 2008

To

       The Director of Medical Service

       Regarding Medical Care of Colleen De Valera

I have recently traveled to visit my mother in Nelson who is currently under your care.  I am extremely concerned regarding various aspects of my mother’s care. My mother Colleen De Valera was admitted to Nelson Hospital on June 4, 2008. This request for admission was initiated after concerns about my mothers care at Alexandra Hospital. However upon admission to Nelson hospital my concerns for her receiving ethical and standard of care treatment continued.

I am a native of New Zealand, and a licensed Registered Nurse of N.Z. I have for the past 10 years been working as a Family Nurse Practitioner in the USA. Nurse Practitioners can have their own practices similar to doctors.  They can diagnose, treat and can prescribe all but specific controlled substances such as Oxycotin. They can order blood tests and diagnostic tests such as CT’s, ultrasounds etc. I work in a family practice office, and also have my own private family practice.

My mother had been a resident at Alexandra Hospital for four years.
In May 2008, both my brother and I were notified that my mother had some tests done, and that it looked like she had cancer of the bowel and liver. Upon receiving this news at my home in the United States, I immediately made plans to take my daughter out of school and fly to New Zealand to visit my mother. I was told she quite possibly could only live for “two weeks, or perhaps two months, or two years” with the liver cancer.

Upon my brother’s and my arrival to Nelson on the 27th May 2008, we met with Dr. Mitchell, the medical doctor at the Alexandra Hospital,.

In that meeting Dr. Mitchell reviewed some tests with my brother and myself and we were told my mother probably had cancer of the intestine and the liver.  These were assumptions made from a heterogeneous mass on an ultrasound, and slightly elevated liver enzymes, with a history of blood in the stool.  I had questions at that meeting that these tests were not as conclusive as they were being presented.  Cancer cannot be diagnosed with ultrasonograpy. I have consulted with medical practitioners, specialists, radiologists and general family practice medical providers regarding this and all were in agreement.  

Furthermore, blood in the stool could be caused by non-cancerous things such as polyps, and there are many things that can cause elevated liver enzymes, such as medications such as Codeine, or illness or infection.

In an effort to obtain an accurate diagnosis for my mother’s condition I consulted with Dr. Gregory, an oncologist at Nelson Hospital.  In a conversation with me, prior to the separate incident of the CVA, she shared some thoughts about liver cancer and the very short prognosis there is with this disease. She also shared how unusual it was to see a mass this size and for the person to be still be alive, if it was cancerous. My brother who is not a medical practitioner raised the very valid point that if it was cancer and it was this big she would be dead by now.

Dr. Gregory was also surprised that there were not other masses in the liver, apparently a common occurrence if there “is one mass there are often others.”  The radiologist who performed the ultrasound also offered the possibility of a complex cyst.

Furthermore, after I consulted with various other radiologists and oncologists they were in agreement that they could not say there was probable cancer without further testing. And they also have offered other benign possibilities for these findings.  They were adamant that one cannot go by the ultrasound and symptoms alone and further testing would be needed to make a clear claim about the diagnosis. Dr. Gregory also communicated this to me in a letter “that the only way a definitive diagnosis could be made would be if she (Colleen) was to have a colonoscopy and then potentially a liver biopsy in addition.”

Whether my mother had cancer or not, the fact is she was not lying terminally ill in the bed at Alexandra Hospital and should not have been treated like a terminal patient. It was, however, from this presumptive diagnosis of cancer that my mother was placed under hospice care at Alexandra Hospital.

My mother was at the time of my arrival to visit her at Alexandra Hospital feeding herself and ambulatory with a walker.

On May 31st, I received a call from a nurse from Alexandra Hospital.
She called to tell me that Dr. McGuire had been in to visit, and there was now an order for a morphine pump as my mum was not swallowing and that Dr. McGuire had noted “weakness” on the left side of mum’s body. A thorough, full neurological exam was not performed at that time, nor in the several days that followed.

So, there was no conclusive diagnosis of what was happening with my mother, in regards to the irregularity noted on the Ultrasound. A basic neurological exam was not done even though Colleen was displaying symptoms of dysphasia and “weakness” on one side of her body, which was indicative of an apparent stoke.

On June 2, three to four days had passed and my mother had not been given any form of hydration or nutrition.  No tests had been performed to evaluate the cause of my mother’s very sudden change in consciousness and function.  I came to realize that my mother was on palliative care and was being given end-of-life palliative measures, even though she did not in fact have a confirmed diagnosis of cancer.   She was being inappropriately treated as terminal patient. She had not been given a basic neurology exam. There was no diagnosis or any treatment whatsoever for the apparent stroke. 

Throughout this time I attempted to obtain information and appropriate medical assessment of my mothers condition.  It became evident that even through this was a new acute medical situation with weakness in the body and dysphasia, my mother was being treated as if she had end stage terminal cancer. She was given no fluids or sustenance and turned very infrequently (often being left unturned for 4 to 6 hours at a time, according to what the nurses told me at Alexandra Hospital.)  I have been informed that care such as this is indicative of the very last days of hospice care. Care appropriate for someone who is imminently about to die from cancer, i.e. within 24 hours of death.  But not appropriate in this situation.  Bedsores can occur if one isn’t turned every 2-3 hours, which can lead to infection, suffering and even death from sepsis.

I was in Alexandra Hospital regularly for many hours at the time and witnessed personally that she was not turned, in addition to hearing what the nurses divulged.  I also became very concerned regarding my mother’s suffering and thirst, as she was sucking on the sponges I was using to swab her mouth, and it was obvious she was thirsty. 

It was Queens Birthday weekend and I repeated my concerns and requested on the June 1st and June 2nd that we have a doctor do a full physical exam.   I was told that the doctor would be in on Tuesday. (The Alexandra Hospital brochure states there is medical staff available 24 hours a day.) I met with many obstacles in an attempt to obtain a diagnosis for what was happening with Mum.  During that weekend after the episode of “weakness” I sought medical care for my mother. This was strongly discouraged by the nurses.  I was met with resistance and apparent resentment at every turn.  I was told by my mother’s nurse Rose and the Charge Nurse, that it would be impossible to get someone to come out on the weekend to see Mum, as if to encourage me to stop asking.   When I communicated to the nurses that I would pay to have someone come out privately, I was again told it would never happen. It was as if the nurses themselves believed that their patients do not have the right to have their medical needs tended to after the regular daytime hours.

During this time I requested that a doctor come to visit Mum from the after hours medical services in Nelson.  Dr Vickerman did come out and said that from the physical exam she thought there had been a CVA.

Obviously the type and location of CVA could not be accurately ascertained without CT scanning.  Dr Vickerman also said that the liver mass was not conclusive for cancer, as it could be a well-encapsulated hydatitis cyst. This is something Dr Vickerman brought up quite independent of my suggestion, and something I had mentioned to Dr Mitchell, in the meeting with her on the 27th May.  Dr. Mitchell had said a benign hydatitis cyst was not a possibility because the eosinopils were not elevated. (Dr. Vickerman had told me that a marker for parasites such as “elevated eosinophils may not be present if the hydatitis cyst was “well encapsulated.”)  So the information that had been presented to me and my brother that this mass was cancer and not a benign mass was further brought into question. (Statements by Dr. Mitchell were recorded with an audio recorder and are available upon request.)

So after almost four days with no fluids, I thought it was not a normal and customary practice to be treating my mother as a palliative care patient as we had no conclusive evidence of cancer.  There was a totally new medical situation (the CVA) that again had not been assessed thoroughly via CT scanning.  And it was obvious my mother would die from lack of fluid and nourishment, with nothing but the continuous infusion of the Morphine pump.

It could not be ignored that all vital signs were stable, there was urinary output present, and my mother was sucking on mouth swabs and swallowing which was something she not been able to do earlier in the weekend.   It was obvious also that there was a basic level of nursing and medical care required at this time which was not being provided, which seemed suspicious and perhaps medical care to my mother was being rationed in some way?

And if my mother had experienced a stroke, it is common knowledge that many people whom have strokes do recover.   Having a stroke is certainly not a guarantee for a terminal outcome.  It is certainly not a time to withdraw all basic care of hydration and turning. 

On the afternoon of June 3, I repeatedly requested that an IV be started on my mother, as it was the desire of my brother and myself to stop this deliberate cessation of hydration and nutrition.  Also requested was a CT scan of the brain.  Dr. Blackbeard assessed my mother and reluctantly ordered sub cut fluids, but said it would be easier to start it tomorrow and it wouldn’t make a difference to my mother.  One has to assume that easier meant easier for the staff.  Waiting another day would mean five days had passed.

I repeated my request to Dr. Blackbeard for IV administration, and he again refused.  I was not OK with the administration of subcut fluids rather than IV infusion because of the need to rehydrate my mother at this time.  I was told by Dr. Blackbeard that the care my mother was receiving at Alexandra Hospital would be the same as Nelson Hospital. This is not true, because in fact the nurses at Alexandra Hospital cannot actually insert IVs. (Dr. Blackbeard’s statements were recorded with an audio recorder and are available upon request.)

It is well known that IV fluids are standard of care for someone who needs fluid replacement. That sub cut may be (which is subject to debate) equal as far as fluid maintenance, but an IV is certainly much better for fluid replacement, as is the case for one that has had no fluid for 4 days.  My mother needed IV fluids and fluid replacement. So this is why it was necessary to transfer Colleen to a hospital that could provide a higher level of care. Unfortunately, to my dismay transferring Mum to Nelson Hospital did not initially aid in my mother obtaining this simple support.

Dr. Blackbeard also said during the June 3rd meeting that a CT scan for my mother would not be advisable because the dye could cause her kidneys to fail.  And yet she had had no fluids and was dehydrated which in itself could cause kidney failure.  It did not make sense to me to focus on “concern for” my mother when he was mentioning something that made no sense to me medically or ethically. (The recording of Dr. Blackbeard’s statement is also available.)

And to further add to my concern, in a conversation with Dr. McGuire on June 3rd 2008 (at Alexandra Hospital prior to my mothers transfer to Nelson Hospital) Dr. McGuire informed me “he was not a medical doctor at Alexandra Hospital, but a psychiatric doctor.”   This means his specialty is taking care of patient’s psychological needs - not their physical needs.  So indeed there was a valid need to transfer her to a place where she could be assessed and cared for in an appropriate manner. (This audio also available.)

I was also very surprised when Dr. McGuire pointedly and repeatedly told me that he was unable to assist with or be involved with the medical treatments or decisions with my mother the evening of June 3rd, 2008, while on May 31st, 2008 I was informed that he had seen Mum and had initiated the morphine pump.  It was shocking to hear Dr. McGuire say he was unable to assist me, or my mother in these medical decisions and yet he had been the doctor prescribing the medication. (Audio recording available.)

So after considering the situation, it was clear that Mum would not be able to receive adequate rehydration and assessment at the convalescent home.  Sub cut fluids may be used for fluid maintenance but not fluid replacement as my mother needed.  She needed a higher level of medical care, not available in the Alexandra Hospital. My brother, the only other family member involved, was in agreement with this decision.  With great difficulty, transport and admission to Nelson Hospital was achieved on the night of June 3, 2008.

When Mum was transferred to Nelson Hospital, Dr. Chan was the admitting house surgeon. Dr. Chan repeatedly told me that sub cut fluids were the same as IV fluids, a fact that was later refuted by Dr. Hale and Dr. King; who said that sub cut fluids were used for hydration maintenance but not for rehydration. (These statements by were recorded with an audio recorder and are available upon request.) After four days with zero fluid, my mother needed fluid replacement rehydation which would call for IV fluids, not simply “maintenance.” The following morning when I met with resistance from Dr Hale for this simple request to get IV fluids for my mother, I felt like I was back working in a Third World country where access to care was being rationed and limited - in this case very unnecessarily.  (I have experience working in Third World countries as a medical practitioner, such as Guatemala and India where I have found better health care than in Nelson.)

Please note:  Dr. Hale specifically said that Colleen was transferred to Nelson Hospital “because the nursing and medical staff at Alexandra Hospital could not cope with me” and that they “couldn’t deal with my behavior.”  Dr. Hale then patronizingly went on to say that “they fully understand my grief response.” Colleen was transferred due to my concern and frustration with the hospital for not treating her properly, and because after 4 days with no food and no water they were unable and unwilling to start an IV and had no facilities to diagnose, treat and manage Mum. My “behavior” and my responses were appropriate actions and responses to someone who was advocating for someone who needed care. (Audio recording of Dr. Hale’s statements are available.)

After being at Nelson hospital for 7 hours and repeated requests, IV and antibiotics were finally started very reluctantly by Mum’s consultant.

When I asked for simple basic blood work, Dr Hale again initially refused, saying it would not change the treatment plan and mum had “no obvious infection.” (Audio recording available.) In fact, she had a fever and subsequent elevated white blood cells. Furthermore, when the results of this blood work returned, I also noted that the liver enzymes which had been given as one of the indicators that my mother had liver cancer were now better than they had been in April, prior to the presumptive cancer diagnosis.

There was rapid response to IV fluids, hydration and antibiotic treatment with lowering of temperature, purposeful movement of legs and mother taking sips of water. 

The nurses put my mother on the board for physiotherapy. Dr. Hale’s assessment then was pronounced as my mother having had a Brain Stem Infarct and having only primitive movements along with denial of improvement.  She called my brother and deliberately misled him with this information and contradicted what was being observed at the bedside.  She then unethically guided my brother to agree that because of this ‘supposed’ brain stem infarct to not initiate nutritional support, even after so many days without food. There was also several times that Dr Hale mentioned that because my mothers swallow reflex had not returned in a week, that she would be left permanently with dysphasia.

Upon telephone consultation with several neurologists, and further reading I found out it is not uncommon for a patient’s swallow reflex to not even begin to return until 10 to 14 days after a stroke.  But when my brother heard that her swallow reflex had not returned within the limited time frame that Dr Hale was assigning, this again influenced his decision to withhold any form of feeding.

In defining different types of strokes one finds: “Strokes that occur in the brain stem are devastating. The brain stem is the area of the brain that controls all of the body’s involuntary life functions like breathing rate, blood pressure and heartbeat. The brain stem also controls abilities like eye movement, hearing, speech and swallowing.”

Obviously what was being told to my brother and myself was misleading and false information.  My mothers breathing, heart rate, and B/P were stable.  My mother could hear and swallow.  One can only speculate why Dr. Hale would mislead my brother this way.  Colleagues and friends repeatedly asked if there was financial motivation for these endless choices to not treat in normal or customary fashion.

Colleen was on IV fluids for only two days. I was very shocked and dismayed to discover on Day 6 after the CVA that Dr Hale had restarted subcut infusion at reduced rate of 44cc/hr and started the morphine pump once again, saying my mother was agitated. She was simply moving her right arm and scratching behind her head and stretching.

I was told by three nurses that my brother had agreed to the IV being removed, and to the morphine pump being reconnected. When I finally was able to talk with my brother, he said this was not true and that he had not heard about this and had not agreed to this change.

I was also concerned that the morphine was unnecessary, as my mother was not exhibiting any pain when I was with her, and I had just spent the whole night in her room.  Furthermore, I was very well aware that the morphine would suppress her respirations unnecessarily. (Colleen did in fact show signs of respiratory changes with shallower and decreased respirations when she was on the morphine, and this suddenly ceased after the morphine was discontinued.)

On the 8th of June, on the morning round, Dr. Hale was aware my brother was flying into Nelson that afternoon.  She actually said she wanted Mike (my brother) to see that my mother would be agitated without the morphine.
In reality what happened after being removed from the morphine, was my mother continued to be more alert that evening and over the next few days.  She reached a point of showing an awareness of the family presence and showed an ability to comply, recall and repeat. Mike commented that she was more cognizant and aware than he had seen her in years.  Colleen was following commands of waving and rubbing cream into her face (even on the affected side of her face and also her affected arm.)   She was also reaching for cups and bringing it directly to her mouth. And later she actually reached out to grasp my brother’s sandwich.

This improvement can be seen on a video taken of mother on the 9th of June. (The video contains all of this with the exception of her grasping my brother’s sandwich as that happened the next morning.)
This video can be provided upon request, or viewed online at www.newzealandhospitalcrisis.com/videos.htm

During this time, I made attempts to get a second opinion on my mother’s condition and found that there is no Neurologist in Nelson to consult with. It was a frustrating situation as Dr. Hale was saying that there is nothing but primitive movement in response to stimuli, and friends at the bedside were leaving notes about purposeful movement of legs and I am observing the same, as are the nurses.  Still I was met with continued resistance to CT scanning and told that only if there is survival of 6 weeks post CVA and if consciousness is present “then we pay for CT scans.”

If ALL of this wasn’t more than unbelievable Dr. Hale makes the statement that “dementia is a terminal illness,” which is like saying birth is a terminal illness – one does not know the rate of the illness with dementia, and my mother has recently demonstrated recognition, improvement that from what my brother said was better than she had been for years. (Audio recoding of Dr. Hale’s statement is available.)

Dr. King whom also works at Nelson Hospital was asked to consult with my mother and said some very shocking things.  He said, “There is no evidence that early nutrition aids in stroke recovery.” (Audio recording available) This is something in complete contradiction to the New Zealand Stroke Foundation Guidelines, opinions of neurologists I spoke with as well as making no common sense. Dr. Birkovich who has worked in the Mayo clinic, said, “One would want to think about feeding people as fast as you can to optimize recovery” 

When I asked him what his definition of “early” was, he said “six weeks.” He then went on to say ”we could feed before 6 weeks if it looks like she is doing well, we may not feed for that long if she looks like she is doing badly.”
This attitude and philosophy of deliberately withholding food struck me as barbaric and extremely cruel. (Audio recording available.) As previously stated many times I felt my mother was in a situation worse than a Third World country when I could not get basic hydration and nutrition for her. To concur with this, I found in reviewing the stroke statistics for New Zealand I see that in the OECD, “New Zealand is almost level pegging with Mexico, Poland and Romania for hospital deaths for hemorrhagic strokes” Stroke foundation Issue 14 summer 2008.

Finally after 12 days of no food and repeated resistance from Dr. Hale, Colleen was started on NG tube feedings. The stroke protocols and guidelines state clearly that NG feeding should start no later than 3 days. (Protocols from Princess Margaret Hospital, page 75.)

Throughout my mothers stay I have heard many things that did not make sense to me from my own medical experience: 

Dr. Hale had told me repeatedly that Mum had a brain stem injury and that any movement she had was a primitive withdrawal response. This was said even when purposeful movements were noted by myself and by nurses.

Medical providers at Nelson, such as Dr Hale and Dr King, said that it was not necessary to do a CT scan, as that would not change the medical practice - this was told to me repeatedly. And yet in the Christchurch protocol it is standard practice to confirm a diagnosis.  And when I specifically asked about possibility of starting my mother on Aspirin, I was told by Dr. Hale that we could not do that, as we did not know if my mother had a hemorrhagic stroke or an infarct.  And if it was a hemorrhagic stroke we would not want to increase the hemorrhagic risk. (Audio recording of Dr. Hale available.)

Dr. Hale’s point directly contradicts that diagnosis would not affect potential treatment.  Obviously if a CT scan had been performed at the onset we would have had an accurate assessment of the type of CVA my mother had and it is possible that the medical practice could have changed.  Dr. Hale then stated that she thought we should wait, as she wasn’t sure my mother would be with us in 6 weeks.

Dr. King even flippantly said, “go ask your USA doctors, yes they do tests, but that will not change how they treat the person, ask them and you will see” (Audio available.) In fact this is wholly inaccurate, all the neurologists pointed out this statement is not true, and so does the medical literature.  One example is that if one treats a stroke within the first 3 hours following the initial symptoms, and CT testing is performed indicating the cause of infarct is from a clot, then a tissue plasminogen activator may be given which could potentially dramatically affect the outcome.

So at this point the medical opinion following a CVA as it was told to me by the Nelson staff was to withhold fluid, withhold nutrition, withhold testing to confirm diagnosis, withhold antibiotics and transfer to acute care medical facility. And also to initiate a Morphine Infusion Pump.

I was told repeatedly that ordering tests such as chemistry panels was not required.  Upon request for basic electrolytes to be evaluated I was told by Dr. Hale that it would not alter management decisions. (Audio available.)  When the dietician met with my mother that same day Dr Hale had refused doing a basic electrolyte panel, the dietician said she would need to see a basic electrolyte panel to check on the nutritional status of my Mum. Often when someone’s electrolytes are not in balance the heart also can be affected, and this can very easily be helped with changing the amount and type of fluid coming in via the IV or by electrolyte replacement such as Potassium, which is very easily replaced in the IV solution. So once again I felt that a reasonable request was met with a response that made me feel what I was asking for was unreasonable.

The hospital has many red posters on the walls on the ward describing the rights of a patient.  I believe that there are violations under the Fourth and Eighth right:

Right 8 Right to Support  - “Every consumer has the right to have one or more support persons of his or her choice present, except where safety may be compromised or another consumer’s rights may be unreasonably infringed.” In regard to the term “consumer,” not only is my mother the consumer, and deserving of all the rights, but also my brother Mike is also a consumer as he has Power of Attorney – and he in turn authorized me as a representative and person to support my mother in person.

I regularly felt pushed out by various members of the staff, including Dr. Hale who had spoken to Dr. Nel’s office and told them that she felt “unsafe” around me. Dr. Nel’s office then told me this. Hearing this from administrators felt like a way in which to keep me quiet and not continue to insist on the care my mother deserved. I have since heard from others whom have had problems with Nelson Hospital that they were told the exact same thing. It felt at the time that this was an attempt to take advantage of Right 8 above where it states “except where safety may be compromised” and was a veiled threat to motivate me to stop advocating for my mother. The truth is that I was not threatening or making anyone feel unsafe at any time. I was simply insisting for humane treatment of my mother while seeing her refused nutrition and hydration.

Right 4 Part 2 speaks to the right of appropriate services. And that the consumer is provided with these services in ethical and relevant standards. I believe this right has been violated.  I believe my mother should have been provided basic fluid and food as outlined in protocols from the Christchurch hospital.

When asking Dr. Hale if there are protocols for stroke patients she said that she thought they had them but they were not printed up. Dr. Hale mentioned that the outcomes for their stroke patients were excellent. (Audio recording available.) One has to wonder how valid the statistics are if patients that could change these “excellent statistics” are excluded from benefiting from these services. In fact ineligible because they would not be provided basic care so indeed they would not even survive to make it into the study. 

It is not advanced medicine to realize that giving a patient no fluid or sustenance will result in death.  Not from the stroke but from the cruel and inhumane suffering resulting from lack of sufficient fluid or food.  So when I heard comments such as “die from the consequence of the stroke” from the medical staff we spoke with, I had to wonder what was more true, to “die from the stroke” or to die from the consequence of not being fed or hydrated, or turned and repositioned in bed.

From my research with Neurologists and Physicians, providing hydration and nutrition would not alter the outcome if a patient were going to die of stroke.

Right 4 Part 3.  Every consumer has the right to have services provided in a manner consistent with his or her needs.

Consistent with needs would include the basic requirements of adequate assessment and diagnosis of condition. And fluid and food requirements consistent with her need.

Right 4 part 4. Every consumer has the right to have services provided in a manner that minimizes the potential harm to, and optimizes the quality of life of that consumer.

“Minimizes potential harm” … have heard many times over the days that the providers were concerned about the discomfort of putting in an IV when Mum had had no fluids for four days. I also heard from Dr Blackbeard about his concern for mum’s kidneys of using the dye if an appropriate test of CT with contrast was ordered.  At the time mum had had no fluids for 4 days, something by itself that would place undue stress on the kidneys.

Additionally, I have reviewed the “New Zealand Guideline for Life after Stroke” and what follows are relevant items I feel pertain to my mother’s situation:

Reference - New Zealand Guidelines Group (NZGG). Life after stroke. New Zealand guideline for management of stroke. Wellington (NZ): New Zealand Guidelines Group (NZGG); 2003 Nov. 84 p. [164 references]

All people with stroke should have the same degree of access to appropriate stroke services irrespective of where they live, their age, gender, or ethnicity. The multidisciplinary team should use written protocols for the management of common problems following stroke and have a programme of regular education about stroke for staff, people with stroke, and families.

People with stroke should have the initial assessment completed with minimal delay.

Diagnosis of Stroke:
A. Imaging of the brain is required to guide acute intervention. (Adams et al., 2003).
B. The diagnosis of stroke should always be reviewed by a physician with special expertise in stroke. (Royal College of Physicians, 2002).
C. Imaging of the brain should be performed as soon as possible and not more than 48 hours after the onset of symptoms, unless there is a good clinical reason for not doing so. (Royal College of Physicians, 2002).

The assessments listed below should be undertaken for every person with stroke. Clinicians should, where possible, use validated, reliable instruments.
Early Assessments (The First 48 Hours)
Initial assessments should include the following parameters:

* Level of consciousness
* Swallowing
* Nutrition
* Continence
* Risk factors
* Hydration
* Self-care
* Communication
* Appropriate moving and handling of the person with stroke, matched to the level of impairment
* Risk for falling
* Risk for developing pressure areas
* Risk for deep vein thrombosis/pulmonary embolism

Aspirin 160 to 300 mg should be given as soon as possible after the onset of a stroke in most patients if a diagnosis of intracerebral hemorrhage has been excluded with brain imaging. (Adams et al., 2003; Royal College of Physicians, 2002).

Mobilization should be encouraged as early as possible after the onset of the stroke. (Adams et al., 2003).

Fever should be controlled with the use of antipyretics, such as paracetamol, and treatment of the underlying cause. (Adams et al., 2003).

All people with a definite or presumptive diagnosis of stroke should have the following investigations *:
• full blood count (including platelet count)
• erythrocyte sedimentation rate / CRP
• serum urea, creatinine, electrolytes, blood glucose, albumin
• electrocardiogram

In the publication “New Zealand Protocols for Stroke and Management of TIA” published by The Stroke Unit Network New Zealand, it states, "Dehydration is a common and avoidable problem after an acute stroke. Patients are frequently unable to eat and drink. Dehydration can result in discomfort, hypotension and decreased cerebral perfusion.  Avoidance of both dehydration and hypotension are associated with improved patient outcome after a stroke.  In general 2 liters/day of fluid are required after an acute stroke.  Unless there are contraindications or cautions such as those mentioned in the protocols."  (Page 76)  

The document also speaks to the management of patients with impaired swallow. That feeding is started at three days with a naso gastric tube.  (Page 76)  It also stated that family members have right to have an opinion and have hospitalization for family members.

As can be seen from the information above, the care that I was asking for my mother was not unreasonable or irrational. And yet many things asked for which are on the lists above were refused and there was a negative reaction to the request.  

A neurological exam should have been completed early on. This was not completed initially at all and it was not until days later and only with much insistence.
The CT scan was declined. 
The fluid replacement which is noted in the New Zealand protocols for management of stroke fluids to be replaced "in general 2 liters/day" were not replaced for 4 days and then only after much insistence and repeated requests for the IV.  These IV’s were only given for two days and then IV fluids were withdrawn again to an unnecessary minimal maintenance after that. 

I had also noticed a fever (which had not been brought to my attention) and requested appropriate fluids and antibiotics, which were initially refused. I had also asked about aspirin but because there had been no CT testing done this could not be given. But even in asking for a simple inexpensive test such as an electrolyte panel or basic blood work upon admission these were again refused.

Even when Colleen was reaching out for cups of water, reaching for sandwiches and when she was very clearly having non-primitive movements, such as waving on command, it was still deemed that feeding was not necessary after 12 days with no food.  It was extremely frustrating that simple basic cares and medical testing were withheld from my mother.

Lastly, being told repeatedly by the Physicians in reference to the subjects discussed above, “that is not how we do things in New Zealand” was both misleading and inaccurate.

Per recommendation of The Office of Health and Disability Commissioner I am including a List of Requests:

1. That this situation be investigated.

2. That my mother be given basic sustenance of fluid and food and medical care.

3. For Mum (and others) to be treated ethically and humanely.

4. That if family request such simple things as basic sustenance for their loved ones that that is listened too and not minimized by the medical staff.

5. That it is OK for the family to ask questions and to seek information about their family members condition and options outside the Nelson Hospital. That this should not be seen as a threat but encouraged as it comes from a desire to provide optimum care for their family member.  And that because this is not a specialty stroke unit specializing in strokes that seeking advice from specialty units and neurologists should not be interpreted as a threat.

6. That because my mother and all other New Zealanders have a basic right to sustenance, that it not be withheld.

7. An acknowledgment that the basic withholding and minimizing of fluid and food was unnecessary and unethical.

8. An acknowledgment that there are Guidelines for Stroke care and that my mother was eligible to these basic cares in keeping with basic human rights.

9. An acknowledgment that Dr Hale has said things that were not accurate and that this has affected the decisions my brother has made.

10. That the stroke guidelines which have been advised by the Minster of Health since 2003 be printed up and applied and standardized within the Nelson Hospital Board so that each stroke patient admitted into the Nelson DHB be given the benefit of following these clear guidelines.  And that all the staff involved are trained in these guidelines, i.e. if someone has no family to advocate for them, there are clear protocols in place to provide diagnosis and treatment for all patients.

11. That Alexandra Hospital review and change their emergency and back up procedures.  That appropriate medical staff be on call to provide medical care and diagnosis and treatment when required and the staff not wait until it is convenient for the medical staff.

12. That the Alexandra nursing staff be IV certified, or in the cases of severe dehydration that would be better served by an IV for rehydration, that they be transferred to a facility that can accommodate that.

13. That the Alexandra nursing staff review and change the current flawed guidelines of turning if a patient is not imminently dying from a terminal illness.

 14. That the patients at Alexandra Hospital be able to receive medical care when they need it. This includes weekend and after hours coverage.  And that there are clear written protocols set in place so that all the staff can follow this.

15. That the quality of care issues be thoroughly investigated.

16. That the medical doctors really listen to the family.

17. That the guidelines for the medical ward nursing staff be client and family centered. 

18. That family is treated with respect and kindness by all staff.  That they not be insulted, lied to, belittled or constantly interrupted when trying to speak. 

19. That Physicians receive annual in-service on current management and treatment of CVA’s.

20. That the nursing staff or other medical staff hand out packets provided by the Stroke Foundation to all family of stroke patients so the families know early on that they can receive support and advocacy from the Stroke Foundation.

21. That at the Physicians or clients request, there is the opportunity to conference with a neurologist.

22. That because of the shortage of neurologists in New Zealand, that teleconferencing be an option for providers and their clients.

23. That an independent Ethics Committee be established to assist in evaluating and providing support in decision making in complex cases regarding emergent or end of life care decisions.

24. That the nurses would feed my mother at mealtimes when I am not present to feed her myself.

Please click here to see the hospital's response to this letter, and Su Wyatt's reply.