Re Appropriate Care of a Ward of Court
Jurisdiction | Ireland |
Judge | Mr. Justice Denis McDonald |
Judgment Date | 31 May 2019 |
Neutral Citation | [2019] IEHC 393 |
Court | High Court |
Date | 31 May 2019 |
[2019] IEHC 393
THE HIGH COURT
WARDS OF COURT
McDonald J.
IN THE MATTER OF THE APPROPRIATE CARE OF A WARD OF COURT
Medical and Healthcare Law – Constitutional and Administrative Law – Wards of Court – Committee and Health Service Executive seeking directions as to appropriate care for the ward and directions as to terms of a Do Not Resuscitate Direction – What was the appropriate care for the ward and whether the court could direct how Health Service Executive allocate funds for care of the ward
Facts: The ward, a woman in her early forties, was left in a permanent vegetative state (PVS) after complications from two surgeries following her diagnosis with a brain tumour. Initially the ward was cared for in the Community Nursing Unit, but was then moved to a home facility which was purpose built to care for her and funded mainly by a settlement lodged in court for the benefit of the ward in the sum of €2.4 million. The ward received exemplary care while at the home facility and has lived longer than had been expected, resulting in the settlement being exhausted. The question then arose as to how the ongoing care for the ward is to be provided and funded. The Committee (comprised of the ward’s parents and sibling) strongly maintain that home care is the best interests of the ward. The HSE initially adopted the position that residential care at the Community Nursing Unit would be the most appropriate care for the ward, but then put forward a further proposal for at home care that involved one health care assistant 24 hours a day, as opposed to the two that were currently in place. The HSE also strongly emphasised that the Courts, having regard to the separation of powers doctrine, are prohibited from making orders with respect to issues properly within the remit of the legislature, including questions of distributive justice and finite resources.
Held by McDonald J that the correct approach for the court was to place itself in the shoes of an objective, reasonable, and responsible parent. McDonald J noted that there was a significant advantage of the home environment. He also noted that the HSE’s proposal of one carer would not be sufficient in light of the evidence before the court.
Ultimately, McDonald J held that it was premature for the court to determine the legal issues in the case. Rather, he stated that the parties should take time to review the views and proposals outlined in the judgment in the hopes they of reaching a resolution as to the appropriate steps forward for the ward’s care. The Court would then rule on the legal issues in the event a resolution could not be reached.
Adjourned.
These proceedings relate to the care of a Ward of Court (‘ the ward’) who is in a permanent vegetative state (‘ PVS’). In order to ensure that the identity of the ward is kept confidential I will avoid making any reference by name to any person or institution connected with the proceedings. This does not extend to the independent medical experts who provided reports or evidence to the court. Unlike the general practitioner treating the ward, they have no ongoing relationship with her. Accordingly, identifying such experts will not put the anonymity of the ward at risk.
The proceedings have come before the court in an informal manner in circumstances where the Committee (comprising the parents and a sibling of the ward) have run out of funds to continue the current regime of care of the ward. The court has heard evidence and submissions from the Committee and from the Health Service Executive (‘ HSE’) as to the appropriate care to be put in place for the ward in the circumstances. Directions are also sought as to the terms of a ‘ Do Not Resuscitate Direction’.
The ward is a woman in her early forties. She has one child. When she was in her early thirties she was diagnosed with a brain tumour. Up to that time, she presented as a perfectly normal woman of her age. According to her father, she was a bright happy person with her own home and a promising career. She was fiercely independent and devoted to her child.
Following the diagnosis of a brain tumour, she underwent brain surgery at a local hospital and was cared for in a high dependency unit there. While in the hospital, she suffered a cardio-respiratory arrest. This led to significant brain damage. In particular, it led to paralysis. A tracheostomy was performed so that the ward could continue to breathe. Initially, she was fed through a nasogastric tube. Subsequently, a Peg feeding tube was inserted in her abdomen.
According to her father, at this stage, the ward was aware of everything around her. She communicated by blinking, by the use of the alphabet and by facial expression. Her father explained that, in order to communicate with her, the family would speak to her and she would respond by going through the alphabet. The way this was done was that the family would hold up letters of the alphabet to her. She would blink when the right letter was held up. In that way, she was able to form words and have a conversation. Her father says that the family and some of the nursing staff became accustomed to communicating with her in this way and that they became familiar with the ward's responses. In addition, a physiotherapist in the hospital taught the ward to stick out her tongue when she wanted to be left alone and she mastered this very quickly.
Sometime later, the ward was transferred to a specialist neuro-disability facility in London for further treatment. Tragically, the ward suffered a further respiratory arrest while undergoing treatment in London. As a consequence, she suffered further brain damage. In the aftermath of this incident, the Committee and other family members believed that the ward suffered from ‘ locked-in syndrome’ but they now accept that she is in a PVS condition which is consistent with the medical evidence which I heard during the course of the hearing in March, 2019.
After the second respiratory arrest, the ward returned to Ireland and was cared for, initially, in the hospital where the first arrest had occurred. After a period of time at that hospital, the ward was transferred to a Community Nursing Unit in the same locality. It appears that there were disagreements from time to time between the family and the Nursing Unit in relation to the level of care afforded to the ward while she was in the unit. However, it is unnecessary, for the purposes of this judgment, to consider those disagreements in any detail.
While the ward was in the Community Nursing Unit, her family secured funding from a housing organisation to build a facility adjoining their family home where the ward could be cared for. Once that facility was constructed, it was possible for the ward to return home from the Community Nursing Unit for periods of time. Nonetheless, she remained a patient of the Unit.
In the meantime, proceedings were taken on behalf of the ward against a number of parties in which it was claimed ( inter alia) that there had been untoward delay in diagnosing the brain tumour. Those proceedings were settled in 2013 by the payment, without admission of liability, of €2.4 million. This sum was lodged in court for the benefit of the ward.
Care of the ward, while in the home facility, was undertaken by a private home care service provide engaged by the family. Separately, the HSE provided its own regime of care while the ward was in the Community Nursing Unit. In early 2015, the family was informed by the Community Nursing Unit that there had been an outbreak of the vomiting bug at the unit and it was not in the ward's best interests to return there just then and be exposed to infection. Thereafter, the outbreak continued for a relatively prolonged period. During this period, the private home care service provider continued to care for the ward at the home facility. After a number of weeks, a decision was taken by the family to keep the ward permanently at the specially constructed home facility. This occurred in March, 2015. For a period of approximately one year, care at the home facility was provided by the private home care service provider. However, in an attempt to save costs, the Committee subsequently decided to engage a care team directly to look after the ward thereby reducing costs and the agency fees involved. This home care was paid for out of the proceeds of the settlement of the proceedings taken by the ward (as described above).
The home facility (in which the ward is currently housed) comprises a ground floor extension to the home of the ward's parents. It is a self-contained clinical space with a range of medical equipment available. There is an oxygen supply; a suction machine; there is also an Ambu bag for manual respiratory resuscitation available. The ward is maintained in a hospital bed with a pressure relieving mattress. She continues to breathe through a tracheostomy tube. This is changed regularly by the care staff who have been trained for this purpose. She has a Peg tube or gastrostomy tube in her abdomen through which she is fed. She also has a suprapubic catheter which is changed every six weeks by her general practitioner. She is completely immobile. She is transferred using a hoist (with assistance from two carers) to a modified chair every second day for a number of hours. She has never developed pressure ulcers while being cared for at the home facility.
There are two carers present at all times. As I understand it, they attend in two shifts of twelve hours each. From my observations of a video taken by the ward's father, it is clear that two people are required if the ward is to be moved in position in her bed to any significant degree. It was also common case at the hearing that, if she is to be moved by hoist, the assistance of two persons...
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