Dr. Deirdre Madden:

I thank the joint committee for the invitation to speak today. While my background is as a senior lecturer in law in UCC, specialising in medical and health care law, I have also been involved in the area of medical ethics and patient safety for many years. Although most of us would prefer to die at home, unfortunately it is not always possible for various reasons. A hospital environment often can be a busy, noisy, crowded place to die with too little time and space given to the privacy and dignity of the person. Bad news is delivered in wards with other patients overhearing from behind the bed curtain, families wait anxiously for hours to catch a quick word with a busy consultant and patients often are left wondering what is happening to them.

I do not intend to speak about the physical environment in which people die, as the joint committee has already heard submissions on this topic. However, I would like to speak about the duty of care owed by a hospital to patients and their families and what this means. I am not speaking specifically about a legal duty, breach of which might result in litigation for negligence, but rather a broader ethical duty of care that imports the values of respect, compassion and honesty. To my mind, such a duty arises from the inherent nature of health care itself, which is to care for the person, physically and psychologically, to cure where possible and to provide relief, support and comfort where cure is not possible.

The importance of respect for the dignity of the dying person is a principle with which no one would argue. While we all appreciate the huge and important advances that have been made in medicine, at the same time we must ensure the care of the person does not become overly medicalised to the extent that sight is lost of the fact that the person in the bed is an individual with a voice, wishes and interests, who may have already come to terms with his or her impending death and is not simply a patient for whom treatment is being provided by numerous health care professionals across multidisciplinary teams in an attempt to maintain vital functions. Although palliative care has encouraged medicine to be gentler in its acceptance of death, medical services sometimes continue to regard death as something to be resisted, postponed or avoided. The challenge for doctors here is to balance technical intervention with a humanistic approach to their dying patients. We need practices and structures that offer a compassionate and competent response to illness, fragility and mortality. We need a patient-centred approach, which will focus on the patient’s health, identity and relationships, as well as the processes that support the delivery of good care.

I wish to draw the joint committee’s attention to the national consent policy that was published in May 2013. This policy is intended to apply to all health and social care services conducted by or on behalf of the HSE. I was the chairperson of the national consent advisory group that drafted this policy and I look forward to its effective implementation to ensure a consistent and high-quality consent process in all hospitals across the country. There are a few matters in the policy to which I wish to draw members' attention. First, on the theme of respect and dignity, consent is a process whereby a person gives permission for an intervention following communication of information about that intervention. The ethical rationale behind the importance of consent is the need to respect the person’s right to self-determination, that is, his or her right to control his or her own life and to decide what happens to his or her own body. Good health care decision-making involves trust between the patient and doctor, open and effective communication and mutual respect.

It is important to acknowledge that although those providing health care can usually claim greater expertise in decisions regarding the means to achieve

the end of better health, such as what medication to use, we must bear in mind that the patient is the expert in deciding what ends matter to him or her, how they want to live their lives, what risks they are prepared to take and so on.

I refer to the role of the family. The national consent policy points out that no person, such as a family member, friend or carer, and no organisation can give or refuse consent to a health or social care service on behalf of an adult patient or service user unless they have specific legal authority to do so. This also means that a family member is not legally entitled to direct that any services be provided or withheld or, more important, that any information be withheld from a patient. There is very little understanding of this position among families and within the health care system. Service providers should aim to have good relationships with patient's families, in particular to consult with them about what the patient may or may not want for themselves if the patient is unable to communicate those wishes. However, in reality, this can be challenging to clinical staff where there is disagreement within the family or where there has been a breakdown of trust between the family and the clinicians. Further support, training and guidelines as well as more public awareness and discussion in this area would assist everyone involved in these potentially difficult situations.

I refer to do not attempt resuscitation, DNAR, orders. A DNAR is a written instruction to health care staff not to attempt CPR in the event of cardiac failure. It does not have any application to any other aspect of the patient's treatment and care. There are concerns about a lack of consistency in how resuscitation decisions are made and a lack of clarity about the decision-making process. The consent policy provides clarity around the issues only in the context of consent. It does not provide guidance for technical and practical considerations relating to resuscitation procedures. The national consent advisory group was of the view that there is a need for national guidelines on these issues and I submit that this area would also benefit from wider public discussion so that the public is aware of the decision-making process involved here.

In 2005, I was appointed by the then Minister for Health, Ms Mary Harney, to write a final report on post mortem practice and organ retention. In my report, I highlighted the lifelong nature of bereavement, and the instinct we have when a loved one dies to provide the deceased person with as much dignity as possible even in death. Hospitals must be mindful that they have a duty of care not only to the patient but also a duty which extends after death to show respect for the person's body and to minimise the distress of families by ensuring that appropriate measures are taken in caring for the body. What the hospital staff see as a body is still someone's mother, father, spouse or child even after death. In particular, where a post mortem examination is to be carried out, great care must be given to the way in which this is communicated to families and their authorisation sought for this procedure. The family's experience of the death of their loved one will last for months and years to come and will affect their quality of life and emotional health in many cases.

Although improvements have taken place in this area through the publication of national standards for post mortem practice and work done by the faculty of pathology in its quality assurance framework, it is regrettable that the Human Tissue Bill, which was recommended in my report in 2005, has yet to be published and enacted. The enactment of this Bill would ensure clarity and consistency of standards in regard to obtaining consent or authorisation for post mortem examinations and organ retention and provide reassurance to the public that the organ retention controversy of the past will never happen again while at the same time, encouraging medical education and valuable and ethically approved research. I urge this committee to recommend to the Minister the enactment of this Bill at the earliest opportunity.