Seán Kyne (Fine Gael)
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I welcome the Minister of State, Deputy Butler, to the Chamber and I thank the Cathaoirleach for selecting this important matter. It is an issue that has grown in prominence on account of Covid-19, and it was raised with me by the family of a woman who spent more than six weeks in intensive care in a Dublin hospital battling Covid-19 and its significant after-effects.

The woman in question underwent a cancer operation, which, thankfully, was successful, but she contracted pneumonia in hospital and spent almost eight weeks on that occasion in ICU. Following the excellent care from the team in the hospital, she was transferred from ICU and was on the road to recovery when, unfortunately, Covid-19 struck. Like so many people, she contacted the virus in hospital and had to be moved back to ICU and placed on a ventilator again. I understand that in most cases a ventilated person has to be kept heavily sedated, including in paralysis, due to the body's natural tendency to reject the ventilator. One can only imagine the worry and concern the family experienced as their loved one made it through ICU and into recovery only to be rushed back to ICU on account of this new and unknown virus.

On this second occasion, the patient was in a weakened state and gravely ill. It was at this time a nurse in the ICU mentioned to the family there was a do not resuscitate, DNR, order on their relative's file. This came as a complete shock to the already anxious and worried family. It led to several days of attempting to establish what the DNR order meant in practice at a time all hospital visiting had ceased and all communication with families was conducted over the phone. Very often, the staff member assigned to liaise with a family was a retired person who worked not from the hospital but from home. The family was told the nurse should not have mentioned the DNR order in the manner in which it was done. The family received an apology and an explanation regarding the reasons for a DNR order.

The family was told that over the previous 18 months, the HSE had wanted to be very clear on how far treatment was to be taken. The family was told that in the event of cardiac arrest, the DNR order would come into effect because cardiac arrest in ICU represents a failure in terms of the treatment. In the event of a cardiac arrest the quality of life of the patient would be negligible. This may all seem rational as I stand here now but at a time when a relative is seriously ill in ICU on account of a new illness and all hospital visiting had been suspended, it is a difficult concept to understand or accept.

Thankfully, in this case the woman overcame Covid-19 and has made a strong recovery in spite of the odds, which were stacked very much against her, and she is at home now with her family. However, the family's experience raises serious questions over the use and practice regarding DNR or do not attempt resuscitation, DNAR, orders. From my limited knowledge of the issue, I understand there is no strict definition of what a DNR order constitutes, although it generally it is taken to mean an order that no intervention be made when a person suffers cardiac arrest. There are no written guidelines for hospitals, although I stand to be corrected. There is no specific legislation in operation to guide this sensitive area.

The Assisted Decision-Making (Capacity) Act 2015 provides a legal framework for advanced healthcare directives but, to the best of my knowledge, the relevant section in Part 8 of the Act has not been commenced. In May, the Irish Hospice Foundation highlighted the need for the commencement of the legislation on account of Covid-19. I understand the national office for human rights and equality policy in the national quality improvement team of the HSE has oversight of guidance on DNAR orders and has been working to help prepare for the commencement of the legislation.

We need clarity in the use of DNR and DNAR orders in Irish hospitals and healthcare facilities. We need clarity on how patients' wishes are respected and we need clarity on the role of families and next of kin. We need an information campaign to raise awareness of DNR orders and the wider area of advanced healthcare directives. We need to spark a national conversation on these issues. It is never easy to discuss end-of-life matters because it forces us to confront our own mortality and the pain and loss caused by bereavement. The best time for such a conversation is before a pandemic. The second-best time is now. These issues are relevant at any time but particularly as we challenge and continue to grapple the unprecedented challenge of Covid-19.

Mary Butler (Waterford, Fianna Fail)
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I thank the Senator for raising this very important issue. He is definitely right that the conversation needs to be had. I am delighted to hear the person involved, who brought it to the his attention, has recovered.

The HSE's national quality improvement team in the office of the chief clinical officer prepared and published guidance on this important matter earlier this year, with specific reference to the Covid-19 pandemic. This guidance is for healthcare workers regarding advance care planning and cardiopulmonary resuscitation decision-making, including making DNR decisions. The guidance is applicable to all care environments where services are provided for and on behalf of the HSE, including acute hospitals, the ambulance service, community hospitals, residential care settings, general practice and home care.

Section 4 of the HSE national consent policy, which has been in place since 2013, on DNAR orders, and the HSE guidance regarding cardiopulmonary resuscitation and DNAR decision making during the Covid-19 pandemic, apply to all HSE and HSE funded agencies and give explicit guidance on when and how a DNAR decision can be made. Part 4 of the HSE's national consent policy has been in place since 2013. However, DNAR clinical decisions had been in place for many years before this, guided by the Irish Medical Council's code of professional conduct and ethics. The HSE guidance regarding cardiopulmonary resuscitation and DNAR decision-making during the Covid-19 pandemic was developed in May 2020. The purpose of the guidance is to affirm existing good clinical practice and guidelines regarding CPR and DNAR. The guidance did not change any of the principles addressed in the HSE's national consent policy of 2019.

The development of the HSE National Consent Policy 2013 included service user representation and there was wide consultation on this policy, which also included a large number of service user groups and individuals. The national consent policy states with respect to individual DNAR clinical decisions that where a person has capacity the clinical lead should discuss options with the person in the first instance. This is very important. If the person is unable to participate in discussions after being given appropriate supports to do so, discussions with those close to them can provide insight into their previously expressed goals and preferences. However, the role of those close to the person is not to make the final decision regarding CPR or to consent to a DNAR decision as this authority does not exist under current law. The purpose of these discussions is to help the senior clinical decision maker make the most appropriate decision, having regard to the goal and preference of the person.

Decisions about CPR must always be made on the basis of an individual assessment of each individual case and not, for example, solely on the basis of age or disability. Any distinction based solely on such criteria is discriminatory and contrary to human rights principles. DNAR decisions are made in the context of the person's overall goals and preferences for treatment and care as well as the likelihood of success and the potential risks and harms.

Seán Kyne (Fine Gael)
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I thank the Minister of State for that comprehensive reply. The most important point is that the lady in question received excellent care in the hospital in question and there is no question about that. The second most important point is that the lady in question has made a full recovery. The issue at stake here is with regard to her making a decision, or the family being informed and consulted, which they were not in this case.The nurse in question made the very welcome call to the family and stated that there was a do-not-resuscitate order, DNR, which came as news to the family. Subsequent calls from people said she should not have informed the family. That is worrying because the family have a right to know what is happening with their loved one in terms of a DNR. I will bring this information back to the family and if they need to follow up, I am sure the Minister of State will be happy to liaise with them. It is important that lessons are learned and better procedures are followed in life and death issues like this.

Mary Butler (Waterford, Fianna Fail)
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I thank the Senator for raising this important issue and thereby providing the opportunity to discuss this matter in the House. The fundamental principles of good clinical practice in sensitive policy issues are non-discriminatory decision making, advanced care planning and assessment of the balance of benefit and harm. The Covid-19 pandemic presents new challenges in making advanced care plans and in cardiopulmonary resuscitation decision making.

The Senator has made two good points at the start. An information campaign would be hugely important. I will make a suggestion because this is an area that needs more discussion and we will not be able to solve it in eight minutes in this House. It might be worth writing to the Oireachtas Joint Committee on Health to suggest it takes a look at the issue. It is only when a family is in that situation that they realise there is something on a file they are not comfortable with. I welcome the fact the Senator has raised the issue and I will bring it back to the Minister for Health and raise the Senator's concerns.