Ron Paterson: Dying alone – Covid-19 and the right to support

Opinion

Reports have surfaced of dying and critically ill hospital patients denied visits by close family during New Zealand's current lockdown, due to "no visiting policies" imposed by district health boards.

These are extraordinary times, and all New Zealanders are making sacrifices as we seek to prevent the transmission of Covid-19. Taking extra steps to protect doctors and nurses, and other hospital patients, seems sensible and necessary.

But we also need compassion and proportionate responses from health authorities. New Zealand is rare internationally in having a legislated Code of Patients' Rights, a legacy of the Cartwright Inquiry.

One of the 10 rights, right 8, states: "Every consumer has the right to have one or more support persons of his or her choice present, except where safety may be compromised .…"

It is one of the few rights enshrined by the code that was not previously recognised by the law. Over the past two decades, practice has changed to accommodate the legal right to support and there is now widespread acceptance that patients may be accompanied by a support person of their choice.

The right to support exists for a reason. In general practice, the presence of a support person during consultations can reduce patient anxiety and facilitate discussion of options. During labour and delivery, support people can encourage the mother and share the joy of birth. When we are sick and in hospital, the presence and touch of whānau can provide relief and comfort. Families are often a vital part of the care team, not mere "visitors".

NeedToKnow3

The Code of Patients' Rights is not suspended during the Covid-19 pandemic. But the right to support is qualified by the words "except where safety may be compromised". A further qualification is made by the generic "reasonable actions in the circumstances" defence for healthcare providers, in clause 3 of the code.

Every effort should be made to accommodate an individual patient's need for support, even in times of Covid-19, says Professor Ron Paterson. Photo / Brett Phibbs

Does patient safety and the circumstances of the current pandemic dictate that hospital patients have no right to support? Clearly, a patient who is hospitalised for treatment of Covid-19, will need to be in isolation – though while they remain conscious the hospital should help them have iPad or phone contact with their support people. For Covid-19 patients in ICU, even that limited contact is likely to be impracticable.

• Covid19.govt.nz: The Government's official Covid-19 advisory website

As news media from Europe and the United States have graphically showed, it is a heart-breaking reality that patients may have only the support of caring ICU doctors and nurses when dying from Covid-19.
Thankfully, Covid-19 has only a very limited presence in New Zealand hospitals to date. Yet some DHB 'no visiting' policies, necessarily drafted in haste at the onset of the current crisis, make no distinction between Covid-19 patients (16 people on 10 April) and the vast majority of other patients, and allow only for rare exceptions on compassionate grounds, with a single support person permitted, provided they are wearing Personal Protective Equipment.

This seems a disproportionate response, particularly for critically ill or dying patients who do not have COVID-19. As Aucklander Jess Parkes said recently, describing the impact of Middlemore Hospital's limit of 15-minute visits by one family member only to her dying grandfather, John Parkes: '… for compassionate reasons, families should be able to say goodbye to their loved ones – not just my family, but other families who are in the same position. He doesn't deserve to die alone.'

As a prominent Canadian bioethicist wrote in the aftermath of the SARS epidemic in Toronto in 2003: 'Contagious diseases, like wars, test the limits of freedom in societies.' The risk of COVID-19 transmission, especially in a hospital setting, means that restrictions to a patient's right of support are necessary. However, patients in hospital at this time of heightened concern about the spread of disease, may understandably be especially anxious and fearful, and seeking some in-person support from a close family member.

Every effort should be made to accommodate an individual patient's need for support. Where it is necessary to override the right to support, it should be done in a humane, caring, and even-handed manner. We should tread carefully before denying a patient's right to support, for in times of illness and death we all have a fundamental human need to be close to our nearest and dearest.

• Ron Paterson is a professor of health law and policy at the University of Auckland and was Health and Disability Commissioner from 2000 until 2010.