WITHDRAWAL OF LIFE SUPPORT BACKGROUND

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1 WITHDRAWAL OF LIFE SUPPORT BACKGROUND The complainant s wife was admitted to a public hospital for an operation to secure access for peritoneal renal dialysis. At the time of the patient s admission she was 30 years of age. She subsequently developed peritonitis and was admitted to the Intensive Care Unit (ICU). The patient remained critically ill for some time after being admitted to ICU and then her condition began to improve. During this critical period discussions were held between the patient s treating physicians and the complainant s family concerning the patient s likelihood of survival. THE COMPLAINT The Commission received a joint complaint from the family members stating that the information and diagnosis given to both of them following the patient s admission to ICU was grossly inaccurate and dangerous to her survival and that the complainants were pressured to allow the turning off of the patient s life support on grounds which were medically unfounded and unsupported. The Commission, after completing preliminary inquiries into the complaint, determined that it would undertake a formal investigation into whether or not the complainants were pressured and the advice given to them was accurate. As is required by Part 8 of the Health and Community Services Complaints Act, the Medical Board were notified of the complaint as a number of registered medical practitioners were named. Collectively throughout this case summary these practitioners are referred to as the Medical Team. THE INVESTIGATION In carrying out the investigation, the Commission: Provided a copy of the complaint to the public hospital and sought a response. Obtained a copy of the patient s medical records from the public hospital and an interstate hospital. Commissioned an expert opinion from a Staff Specialist in Intensive Care and Area Director of Intensive Care at an interstate hospital. Arranged a meeting between the complainants and the expert in Darwin. Obtained copies of: o Good Medical Practice Guidelines issued by the Medical Board of the Northern Territory; o ANCI National Competency Standards for the Registered Nurse; o Policies and Procedures Regarding Withholding & Withdrawing of Life Support from Royal North Shore Hospital; o Interim Guidelines on Dying with Dignity from NSW Health; o Guidelines for Decision Making at the End of Life from NSW Health; and o Registrar Protocols for Withholding and Withdrawing of Life Support from public hospital the subject of the complaint.

2 The draft Investigation Report was forwarded to the Department of Health and Community Services (DHCS), the Medical Board of the NT and the complainants for comment prior to finalising the investigation. OTHER ISSUES During the course of the investigation a number of other significant issues were raised and addressed. These were: Documentation During the course of the investigation it became apparent that the clinical notes were silent on many of the issues raised in the complaint and were therefore of little or no assistance to the Commission in reaching its conclusions. Failure to Provide Accurate Information, Failure to Read Medical Notes and Respect and Dignity Protocols The complainants believed there was a failure by the treating physicians to provide accurate information, to read the medical notes and to observe respect and dignity protocols during the critical period of the complainant s medical condition. All of this ultimately led to them losing confidence in the advice provided by the medical team. Practices and Procedures in End of Life Decision Making During the course of the investigation it became apparent that the public hospital had not followed the practices and procedures as recommended in End of Life Decision Making as followed in other Intensive Care Units. The hospital s failure to follow these practices and procedures is of substantial importance. Had the public hospital followed the recommended practices and procedures the trauma and distress caused to the complainants may well have been avoided. ISSUE 1: THE COMPLAINANTS WERE PRESSURED TO ALLOW THE TURNING OFF OF THE PATIENTS LIFE SUPPORT ON GROUNDS WHICH WERE MEDICALLY UNFOUNDED, UNPROVEN AND UNSUPPORTED BY HER MEDICAL RECORDS Issue 1A Advice that access for dialysis was no longer available Based on the medical records and information before the Commission, the response from the public hospital, the expert opinion and responses to the draft Investigation Report, the Commission concluded that: The medical records showed that a provisional diagnosis of vascular stenosis was made by the Renal Specialist when the patient was admitted. The patient s past medical records and her past Renal Specialist from interstate had not been consulted prior to or after her admission. The Renal Specialist, after undertaking a Medline search, identified a possible procedure which might offer access for dialysis. The Renal Specialist handed over ward service to another Specialist.

3 The procedure the Renal Specialist identified as a result of his Medline search had not been discussed with the medical team or carried out prior to when the complainants had their meeting with the medical team to discuss the appropriateness of continued treatment. The public hospital acknowledged that discussions centred on the patient s current critical illness with a history of extremely difficult intravenous access for long-term dialysis and an outcome associated with poor quality of life and shortterm survival. There was no evidence to indicate that the medical team, at the meeting, gave any indication to the complainants that there was a possible procedure that could be carried out on the patient that might offer her access for dialysis. There were no facts which would allow the Commission to conclude that stenosis was used by the hospital representatives at the meeting to pressure the complainants to permit cessation of life support. At the meeting the medical team considered that: o intravenous access for long term dialysis, which was life sustaining for the patient, was extremely poor; o the patient would not survive beyond two weeks with the access currently being used for dialysis; o in these circumstances the patient s life support could be withdrawn; and o the possible procedure identified by the Renal Specialist was not mentioned. Issue 1B The advice that brain death had occurred Based on medical records and information before me, the response from the public hospital, the expert opinion and the further response from DHCS to the draft Investigation Report the Commission concluded that: Brain death was not considered or discussed with the complainants. Neurological deficit and not brain death was discussed. EEGs and a CT scan were not performed to detect whether there was a loss of neurological function. The medical team were of the opinion that the patient had reduced neurological function based on the following information: o she had a critical illness, particularly ongoing sepsis, and very low blood pressure requiring inotropic support at the time; and o a torch had been shone in her eyes and there had been no pupil reaction in one eye and only a little in the other. The advice given to the complainants of the hopelessness of the patient s situation was appropriate at the time based on the available medical evidence. At the time of discussions by the medical team with the complainants they had concluded that the patient had no chance of survival and her life support could therefore be withdrawn. There was a communication failure on behalf of the medical team.

4 If the complainants had not opposed and resisted as strongly as they did, the life support for the patient would most likely have been withdrawn. The Commission understood that the complainants would have seen the meeting as adversarial they felt pressured, they did not agree with the hopelessness of the patient s medical condition, they believed that other tests should have been undertaken and they did not believe life support should be withdrawn. The Commission also noted that one member of the medical team stated that the meeting did not go well and clearly the family were very upset and stressed by it. On the other hand the medical team had, on the basis of the patient s medical condition, concluded that her situation was hopeless and that life support should be withdrawn. On examining all this information the Commission remained of the view that under these circumstances had not the complainants strongly resisted the views of the medical team, the life support for the patient would most likely have been withdrawn. In the end however the differing views were expressed and the correct outcome was achieved, that is, the life support for the patient was not withdrawn. ISSUE 2: FAILURE TO PROVIDE ACCURATE INFORMATION One of the major concerns expressed by the complainants was that they lost confidence in the patient s medical team because of the inaccurate information provided to them by some of the treating physicians and their obfuscation and lack of respect. There were a number of examples sighted by the complainants to demonstrate why they had lost confidence and the Commission on examining these concluded that as an adequate explanation had not been provided to the complainants it was reasonable for them to conclude that they were not being provided with accurate information. The Commission accepted however that under the circumstances (saving the patient s life) it was reasonable for the medical team to give these incidents a low priority. This failure to openly and honestly discuss what was happening and why with the complainants was another example of poor communication by the medical team. ISSUE 3: FAILURE TO READ MEDICAL NOTES The complainants identified three specific instances where, in their opinion, medical staff failed to read medical records and that because of this they were not provided with accurate, honest and open information so that they might be in a position to understand what was happening and therefore make informed decisions regarding the patients care, particularly in relation to withdrawing life support. Based on the medical records and information before the Commission, the response from the public hospital, the expert opinion and the response by DHCS to the draft Investigation Report, the Commission accepted the expert s view that information is transmitted from the intensive care team to other specialists involved verbally and has all the attendant benefits he identified, that is, it is safer, more effective and associated with the important benefit of the possibility of questions and answers and collective wisdom. The Commission was mindful however that this view was predicated on good communication between treating doctors such as occurs on ward rounds, ward discussions and hand-over rounds, and that such discussions should at the very least be summarised and documented.

5 The Commission still remained of the view that not only good communication, but the taking of accurate and adequate notes and the reading of clinical notes, were all vital to good patient outcomes, particularly where a number of specialists were involved. In a situation where the patient is in intensive care and there are a number of physicians treating the patient, it is essential, in the Commission s opinion, that medical records are constantly updated and accurate and that they are read by those treating the patient. Overall, the three incidents referred to above did not support a view that the medical team failed to read the patient s medical records or that such a failure had the potential to lead to an adverse event. The Commission was satisfied that there were procedures and practices in place to ensure that the patient was at all times provided with appropriate treatment and care. ISSUE 4: RESPECT AND DIGNITY PROTOCOLS The complainants did not consider they were treated with dignity or respect and cited three specific examples to demonstrate this. The Commission understood how the complainants, based on the experiences exampled above, would conclude that they were not treated with respect and dignity. However, after receiving the further comments from DHCS and reviewing all the information, the Commission concluded that apart from one incident where the complainants were not treated appropriately in all other circumstances the complainants were treated with a reasonable amount of respect and dignity. In addition, as already stated, while the Commission remained of the view that it was reasonable for the complainants to conclude that they were not provided with accurate information, it accepted that under the circumstances (saving the patient s life) it was reasonable for the medical team to give the particular incidents a low priority. ISSUE 5: DOCUMENTATION Throughout the report received from the expert, he noted the absence of medical documentation. The Commission also made a number of references throughout the report to there not being adequate documentation. There are a number of standards that are applicable to appropriate record keeping, namely: Good Medical Practice Guidelines ANCI National Competency Standards for the Registered Nurse After considering the comments of the expert, the medical records, the standards that are applicable to both the medical and nursing profession in the NT and the responses to the draft Investigation Report, the Commission was of the opinion that Health Professionals have a legal and ethical obligation to maintain accurate and adequate records to ensure good patient care. The Commission concluded that the standard of record keeping in relation to the care and treatment provided to the patient was not of a reasonable standard. PRACTICES AND PROTOCOLS IN END OF LIFE DECISION MAKING

6 The Commission sought comment from the expert on whether the hospital had any up-to-date policies/practices/protocol in place relating to End of Life Decision Making. The expert stated that he did not know but hoped the answer was yes. The expert also provided the Commission with copies of policies and guidelines from other interstate hospitals. The DHCS provided the Commission with a copy of their End of Life Decision Making practices/procedures/protocols followed by the Hospital which consisted of a one page document entitled Withholding and Withdrawal of Life Support which in the opinion of the Commission substantially dealt with medical issues and was not a document addressing procedures and protocols for End of Life Decision Making as provided for in other hospitals in other states. The Commission concluded that the pressure the complainants were subjected to could have been avoided, or considerably reduced, if DHCS had in place, and followed, practices and procedures similar to those developed by interstate hospitals. After considering the literature and the recommended practices and protocols in End of Life Decision Making made available by the expert, the Commission concluded that DHCS should immediately follow proper procedures and protocols in End of Life Decision Making and, to do so, adopt the recommended guidelines practiced by the Royal North Shore Hospital or something similar. OVERALL STANDARD OF MEDICAL CARE AND TREATMENT Overall the Commission concluded that the medical care and treatment provided to the patient was of a reasonable standard. However there were specific aspects of her care that the Commission had concerns with, namely: Inadequate documentation of medical records Inadequate consultation of past medical records and Renal Specialist Life support for the complainant would most likely have been withdrawn if not for the opposition and resistance to such an approach by the complainants Poor communication by the medical team with the complainants. Communication between the medical team and the complainants was not to a reasonable standard. The Commission s concern in this case was that the medical team were not proactive in obtaining information from, or discussing life support withdrawal with, the complainants. THE CODE The Commission concluded that the following principles of the Code had been breached: Principle 2.1 (b) and (c) (Providers have a responsibility to provide accurate and up to date information responsive to the user s needs and concerns, which promotes health and well-being; and answer questions honestly and openly) in that the complainants (on behalf of patient) were not provided with accurate and up to date information at all times and neither were all their questions answered honestly and openly. Principle 6.2 (a) (Providers have a responsibility to respect the role family members, friends, carers and advocates may have in the user s care and treatment.) in that the roles of complainants were not respected.

7 RECOMMENDATIONS The recommendations made by the Commission focused on improving the systemic issues identified as a result of undertaking this investigation. They were: 1. DHCS obtain literature from relevant professional organisations and involve all medical and nursing staff in up-skilling their practices in maintaining accurate and adequate clinical notes to ensure good patient care. Specifically it recommended: Education about documentation; Auditing of documentation; and Action to be taken on audit results. 2. DHCS immediately develop and implement proper procedures and protocols for End of Life Decision Making, adopting as guidelines the documents provided by the Royal North Shore Hospital and NSW Health or developing something similar. 3. DHCS ensure a social worker is available to families with patients in ICU in order to meet the needs of the family in situations such as that experienced by the complainants. 4. In view of the concerns raised by the Medical Board in their correspondence to the Commission, the report be forwarded to the Medical Board for them to take action as they consider appropriate. In response to this recommendation, the Medical Board advised that they had determined to take no further action in relation to the individual named medical practitioners. Importantly DHCS are undertaking a major project to review policies and procedures associated with end of life decision making by patients, families and significant others.

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