New Zealand Hospital Crisis

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Letter from nelson hospital board

Nelson Marlborough District Health Board

DHB Office Nelson Hospital

Fax: (03) 546 1747 Phone: (03) 546 1848

Private Bag 18 Nelson, New Zealand

11 August 2008 

Dear Ms Wyatt

Complaint concerning your mother Mrs Colleen de Valera

You have provided a comprehensive record of your concerns regarding your mother's care whilst a resident in Alexandra Hospital and more recently during her period of hospitalisation in Nelson Hospital.

Your mother was resident in Alexandra Hospital for four years from 2004. Her history included:

1.  Pituitary adenoma which was resected in 1972, then treated with radiotherapy.

2.  Left sphenoid meningioma resected in 2002.

3. Hypopituitarism secondary to radiotherapy.

4.  Osteoarthritis

5   Severe dementia

Your brother Mike has had Enduring Power of Attorney over this time. An Enduring Power of Attorney is established when somebody's competence to make decisions around their wellbeing and health is diminished. Your brother has this role with respect to your mother.  We have no evidence to suggest that you, at any point, have become your mother's authorised or chosen representative.

A clinical diagnosis of bowel malignancy with probable liver metastases was made. Please note that this was a diagnosis not an assumption.

The diagnosis was made on the following basis:

1. Pain:   Abdominal discomfort was first noted on 23/11/2007. This   slowly increased in intensity over 3-4 monhs and was controlled by codeine, then morphine.

2. Altered bowel habit:        Diarrhoea was noted on 5/12/2007, 3/01/2008 and 7/02/2008.

3. Intestinal bleeding:          A positive faecal occult blood was noted on 19/02/2008.

4. Liver ultrasound:             This was arranged on 910412008 because of extreme tenderness of the liver to examination. A mass 7cm x 6cm x 5cm was found. Discussion with radiologist Dr. Moore indicated this was likely to be a metastasis from a primary bowel cancer.

I find Dr. Nel's justification of the diagnosis of the bowel malignancy with probable liver metastases hard to believe:

1. Pain: Increasing abdominal pain requiring Codeine and then Morphine?  This is not accurate.

Pain was not controlled with morphine.  The only morphine that was given was by Dr McGuire, which was after the CVA and then restarted by Dr. Hale for a brief time in hospital.  And when the morphine was discontinued with the agreement of my brother and myself, Mike reported seeing my mother more alert than years.  If one was to look at the medical medication records it can be clearly seen that for the last seven weeks my mother has had no narcotics only occasional panadol.

(This seriously makes me wonder if she was being over medicated at Alexandra hospital?)

2. Altered bowel habit?  Confirmed with having diarrhea on just 3 occasions in a 14-month time span!  Again if they had been so concerned about these symptoms being suspicious why would you wait 14 months to check them out.  And diarrhea three times in 14 months is again not conclusive for cancer.

3. Only one positive fecal occult blood? (The rate of false positive is high with one occult test.  And often three are used to help with accuracy)

4. Ultrasound result.  Of note was the pain started in November but was not checked by an ultrasound until 6 months later.

In summary these criteria cannot be conclusive for a diagnosis of cancer.  As has been stated by Oncologist and noted in complaint, clinical diagnosis cannot be made by Ultrasound.  And the point still stands that even if she did have cancer.  She was not dying of cancer at Alexandra hospital.  The CVA was a new situation and fluids should not have been withheld.

Colonoscopy is the investigation of choice for bowel cancer as it enables a tissue diagnosis.  This had originally been arranged but, on reflection, was cancelled. It was felt that the procedure would be extremely distressing to your mother, and would not alter her conservative management. Her severe dementia made it impossible for her to understand the procedure and the risks involved. The plan had been to care for your mother symptomatically in familiar surroundings. This course of action was advised by oncologist Dr Kate Gregory.

Any procedure to manage a definitive diagnosis in someone with diminished competence would only be undertaken with both the consent of the person with Enduring Power of Attorney and an expectation that it would influence the patient's outcome. Investigations that you have suggested may be appropriate at various junctures in your mother's care would only be done when the clinician responsible on the basis of best practice will use the information gained to influence the care provided.

Dr Mitchell met with you and your brother on 27/05/2008 along with Hospice Nurse Valerie Bone and Nurse Jacqui Monopoli. Hospice covers a wide range of care for the whole person and their family - mental, physical and spiritual. Hospice care alleviates suffering and facilitates the journey when cure is no longer possible; it is not an indicator that death is imminent. Dr Mitchell offered to meet with you again during her visits to Alexandra Hospital but this offer was not accepted.

Your mother deteriorated suddenly and significantly on Queen's Birthday weekend. She was seen by Dr Simon McGuire on 1/06/2008, and by Dr Audrey Vickerman on 2/06/2008. Dr McGuire has advised that he did not undertake a full neurological examination due to the level of sedation introduced on the basis of pain symptomology as a result of her other pathology.

Dr McGuire is employed to provide psychogeriatric services, he is also an experienced general practitioner, and he attended your mother over the period of the weekend and is well versed in palliative care. Dr Vickerman attended at your request and confirmed the diagnosis of stroke by her neurological examination. Your mother was unconscious and comfortable at the time.

The reason stated to explain why Dr McGuire did not do an exam does not make sense.

Supposedly a full neurological exam was not performed due to the level of sedation.   Too sedated?   It was in fact a change in her neurological function, which prohibited her from being able to swallow meds for almost a day so she had no medication, and he had not yet started the morphine pump.  She was not sedated; she had the sudden onset of a change in consciousness, which warranted a full neurological exam.

When this did not happen, and I was told there was no Dr. available to do this examination over the holiday weekend, I did in fact accomplish arranging consultation with Dr. Vickerman with great effort, and no assistance from Alexandra staff.  Once transfer to Nelson Hospital was achieved the request for neurological consultation and scanning was made many times to obtain accurate diagnosis; to ascertain the type of stroke my mother had incurred.

I'm not sure how she was being cared for or 'kept comfortable' by denying her food and water, effectively starting a policy of starving/dehydrating her to the point of cessation of life...

Dr Mitchell saw your mother on 3/06/2008. She was in bed, her limbs were flaccid and her only response was a brief flicker of her eyelids to her name. There was no spontaneous movement or speech. Dr Mitchell has advised she did not feel it appropriate to check her response to painful stimuli as you were present in the room at the time and might be distressed by this procedure and this would not have added anything substantive to the diagnosis.

Your mother's level of consciousness indicated severe impairment. Her respirations had become very noisy despite no clinical evidence of a chest infection, and she was medicated appropriately for excess secretions with atropine and scopoderm. This is often a pre-terminal condition.

The palliative approach was as is commonly practised in New Zealand. While you are concerned that your mother was not adequately hydrated, through the use of an IV line or receiving sufficient nutrition, she was neither distressed or in discomfort.

Not distressed or in discomfort?  What would qualify as being distressed to the body, if not it being denied the basic requirements such as water?  Perhaps you would feel it would be distress if in addition to denying a person food and hydration they also be denied oxygen as well?  What is your opinion, if you were unconscious due to an accident or other physical factor, would you personally consider while unconscious, starting to be withheld food and water leading to starvation and eventual death, would that be distressful to you?

My mother was thirsty and hungry, eventually reaching for cups of water and sandwiches.

With respect to turning, this is also minimized in palliation through the use of sophisticated pressure relief mattresses.

When Dr Nel also mentions that in palliation there is the use of a sophisticated pressure relief mattress I did not see this mattress, and when I requested that my mother be turned as was appropriate there was no mention or explanation of this mattress or possibility of it being used.

I would like to see the documentation that shows she was on this mattress. To use the term sophisticated mattress, makes it again sound good but I do not believe nor did I observe my mother was on this mattress.

There was in your words "continued resistance" to providing the course of treatment or diagnostics you were requesting and there continued to be conflict between yours and your brother's view on your mother's management. The hospital is required to work with that person who holds the Enduring Power of Attorney.

Please note, to my knowledge my brother was never contacted and asked if my mother should be denied food and water and effectively lead to an inevitable death.  And regardless of that, it is in no way a humane way to treat a person, nor the proper way to treat a stroke.  What is of critical importance in the case with my mother, as well as all other New Zealanders, is the policy of treatment for the elderly in this situation. Whether a family member with dementia has "no quality of life" and should be starved to death at the first available opportunity is an ethical question we must all answer for ourself.  Denying tests such as simple blood work to determine electrolyte balance, checking for infection, anemia etc. is not humane and not good management for a patient that was continuing to live - regardless if Doctors convinced my brother of this or not.

In fact, in the rest home where she is now, she has had more blood work then in the hospital.  At Nelson hospital, there were times when a simple test such as an electrolyte panel were adamantly declined by the Doctor. and then requested by the nutritionist.  What was the purpose in denying such basic things?

Your mother did improve physically and when agreed with your brother, active treatment was increased with the insertion of a feeding tube.

Dr. Nel's response makes it seem like the only thing my brother and I agreed upon was the feeding tube.  This was not true. Mike agreed to the transfer from Alexandra Hospital to Nelson hospital, and he requested the IV fluids and antibiotics for my mother. He was not in agreement with Dr. Hale's decision of stopping the IV fluids and starting the narcotics when she did. (He was not notified about that until the following day after this happened.) In fact my brother and I were communicating well before Dr. Hale began interacting with him.

The way in which the information regarding my mother’s condition was presented to my brother dramatically affected his understanding of the truthful state of my mother’s condition.  This seriously limited his understanding of the various options that existed, and the accurate perception of my mother’s condition.  It was expressed by him that he felt there was no hope for my mother and even up to this date incorrectly believes that mother is still on a feeding tube and would die without it, both of which are not the case.  Furthermore, due to hearing this misleading communication and not having a medical background, which made it obvious to me as a practitioner what was going on, this negatively affected my brother’s and my relationship.

My brother and I were told by Dr. Hale that because my mothers swallow reflex had not returned with in a week, there was no chance that her swallow reflex would return. Being told this by the doctor seriously affected the decision to withhold the feeding tube by my brother.   His  respecting the doctors as being more knowledgeable than him, and not knowing all the medical data and options, he was inclined to follow their suggestions even if the information was not accurate.

Even after my mother was reaching up taking sandwiches out of my brother's hands it was still several days after this that the feeding tube was started.  Both my brother and myself spoke with a neurologist and were told that he would not even expect the swallow reflex to return in the first 10 days.  Clearly this was not accurate.  As has been repeatedly said, there are several videos which document this fact.

With respect to your concern around the violation of your mother's rights and Nelson Hospital not adhering to the Stroke guidelines or protocols as you suggest, these need to be considered in regard to your mother's existing co-morbidities being, surgically induced dementia and symptomatic masses in her liver and bowel. The course of management for your mother was selected on this basis in agreement with your brother.

My understanding is that Stroke Protocols and Guidelines are basically good patient care.  When the protocols are reviewed one see’s clearly that much of what is recommended is basic things like adequate fluid, and nutrition, and adequate testing.  The majority of these tests recommended are not expensive.   The hospital physicians said many times this is "not the way we do it here."   When I asked, Dr Hale said there were not written protocols for the hospital and implied that what I was asking for was irrational and irrelevant.  What I was primarily asking for was fluid and nutrition for my mother and a CT Scan.   Because she had preexisting co-morbidities does not mean she is not entitled to basic humane care. Offering her no fluid and then very minimal fluid was unnecessarily cruel.  Wanting to prevent decubiti and skin breakdown are not unreasonable, and Physiotherapy and swallow evaluation were suggested by nursing when responsiveness and movement was returning.  And as stated previously, my brother was desiring treatment for infection, diagnosis with lab work, scan and IV fluids.

Medical cover for continuing care residents at Alexandra Hospital is provided by the Nelson GP After-hours service. When considered appropriate, residents are shifted from Alexandra Hospital to an acute facility. This was not the process of choice but was done consequent to persistent family demands for acute care.

If there are after hours service providers to provide care, why did the nurses at the Alexander hospital not know this?  Why did I have to ask for a phone book to get the number? And why have very few medical doctors from the after hours service ever been called to Alexander Hospital?  And lastly, why did the charge nurse and other nurses discourage me from pursuing this service.

And furthermore why did Dr. Hale tell me on several occasions that the only reason my mother was transferred was because they could not “handle me” at Alexandra hospital.

This was extremely unprofessional of her.  And totally ignores the fact the family was requesting that she be transferred to Nelson hospital in order to receive medical care.  These statements and the tone and attitude in which they were delivered can be clearly be heard on audiotapes which can be provided.  Incidentally, in the complaint to the hospital there were several outrageous events and statements discussed which had been recorded on a voice recorder with permission. I said these audiotapes were available to support and prove these incidents however no interest for any evidence has been expressed.

We value your suggestion regarding IV therapy. Being able to undertake this on site will reduce the need to shift people between facilities and a number of nurses have undertaken appropriate refresher training since the writing of your complaint.

Decisions on referral for specialist neurologist input remains with the consultant physician. Stroke Foundation information is available at Nelson Hospital but where management is influenced by other pre-existing conditions the provision of such information would not be relevant.

In regard to Neurologists being found only in some areas of New Zealand, shockingly Dr. Nel states referral or input remains a decision of the consultant physician.  Families or patients do not have rights to ask for a specialist's opinion or have timely access to scans and testing?  Again my concern is for all New Zealanders in this regard.

Dr. Nel also feels it is the physicians prerogative to decide which families will be provided with the free information and support provided by the stroke foundation, this is effectively withholding information and free support which is available to families as most will not know to ask for it.

Dr. Nel is incorrect when he says that it is not relevant that my mother's family receive stroke information. The stroke foundations southern representative, Anne-Marie Fowke strongly disagreed with Dr. Nel's comment.

Saying,  "If there are other diagnoses then she would want the patient and family to receive support from the other support services as well".  Anne Marie feels it is the "family or the patients right to decide if they want support from her."  Therefore the whole family was eligible for support from her.  And should have been offered that information so we could make that choice.

The stroke foundation supports all people who have strokes including     elderly people whom often have strokes with pre existing co-morbidities.

There are several Ethics Committees at several levels in New Zealand; our clinicians are guided by evidence-based best practice and work with the patient and their duly appointed representative.

In regard to the ethics committee, the reason I was suggesting an independent ethical board, was to have an established committee trained to deal with questions, decisions and ethical dilemmas openly and with impartial participants dealing with sensitive end of life decisions for families.  What was experienced at Nelson was forceful opinions and recommendations by both Dr. Hale stating what her personal preferences would be if this was her parent, which would be to stop the life sustaining steroid which my mother had taken for many years, which would then result in certain death, and then Dr. King stating in effect what one New Zealander would want or consider as quality of life so too would all New Zealanders and that assessment would be made by his value and quantification.

Again Dr. Nel's comment is dismissive and insulting stating there are several Ethics committees at several levels in New Zealand.  How is that addressing the needs of residents in Nelson District who may need immediate assistance?

I understand that your mother was fed at times that you were not present and that when she was discharged the feeding tube was still in situ. It is the opinion of all medical and nursing personnel named in your complaint that they were cared for your mother appropriately given her terminal dementia.

To say it is the opinion that all nursing and medical staff agree that my mother was treated appropriately is dismissing not to only my mother as an irrelevant human being but also myself. There is not one ounce of compassion for my mother in regard to the treatment and withholding of food and water at the hospitals, nor does there seem to be any in this letter from Dr Nel.  It seems that although many concrete and alarming concerns were raised which happened at Nelson, there seems to be near zero desire or inclination to address them directly in this letter.

What I was advocating for were simple basic things such as hydration, the fact she had dementia is no justification for her to be not given basic human rights of fluid and food.

Dr. Nel has placed the focus throughout on Michael being the family member with the Enduring Power of Attorney, and that being the case my opinions, concerns and questions are considered irrelevant. By continuing to focus on this issue he avoids and can ignore many of my complaints.  These issues extend beyond my mother; they are quality of care issues that need to be addressed within the Nelson Hospital Board.  And these issues extend out to quality of care issues that extend to all elderly New Zealanders.

Other things that were not mentioned in this complaint letter but need mentioning are that my mother was only started on an antihypertensive and aspirin AFTER the complaint had been filed at the hospital and that my mother was feeding herself at the time of discharge.  Additionally, she was seen by nurses and family friends to be writing her name.

In conclusion:

It is disturbing and insulting to me that most of the concerns from the complaint were not addressed, or simply discredited or misrepresented. I am very, very disappointed in Dr. Nel's uncompassionate and condescending response.

The reason the Nelson Hospital or Dr. Hale were not mentioned was I believe strategic.  They are trying to keep the focus on the rest home, and away from the hospital that has been maybe getting too much negative attention lately with a case where the Brightwater woman died due to Nelson Hospital negligence, according to an article in the Nelson Mail.

Dr. Nel ignores an important point and one of the reasons the complaint was written.  My mother's experience is not an isolated situation. There are many, many elderly patients who are treated as my mother was.  Many deaths are hastened by providing no fluid or food and starting morphine pumps.  And if this is a so widely accepted practice, many elderly patients in rest homes and hospitals are not receiving adequate care.

The stroke statistics in New Zealand are at an unnecessarily alarming level of a third word country.  And this is with abundant statistics that say that implementing stokes protocols saves not only money but also human suffering.

Dr. Nel very quickly writes my mother off as a dementia lady (as did Dr. Hale and Dr. King,) who now has no merit, has no rights, and is not worth saving.  But in making this assumption he ignores the fact the elderly people are entitled to basic human rights. 

Dr. Nel also does not address that there are recordings of very, very outrageous things that were said to me and my brother and these facts stand by themselves. (It is alarming that someone in his position would not want to have all the facts and an accurate account of situation to make a proper assessment.)

Additionally, what Dr. Nel does not consider is the fact that I also have a right to ask questions and to make comments about concerns about our health care system which have become obvious to me having gone this time with Mike and mum.  This right is not negated simply because I don’t happen to have “Enduring Power of Attorney.”

I am very concerned about the care of all New Zealanders in similar situations; I am willing to speak out about these issues in any forum and am committed to:

1.  Advocating for Ethical and humane care for the elderly, whether in rest home or hospital.

2.  Advocating for care for my mother.

3.  Advocating for stroke patients and their families to have access to support services.

4.  Advocating for stroke patients to receive appropriate medical care and services.

5.  Advocating for all District health boards to apply the guidelines put forth by the Minister of Health in 2003.

6.  Advocating for the basic human rights of people receiving basic life sustaining sustenance.

Respectfully-

Su Wyatt  R.N.  F.N.P.  M.S.N.