Ron Paterson reckons that up to 85% of terminally ill New Zealanders do not get support when they need it to have a “good death”. He was speaking at a seminar on the Liverpool Care Pathway for Dying Patients at the time. This “statistic” has the hallmarks of guesswork rather than reality, as Paterson is almost certainly basing it on the volume of complaints he gets around the death of patients. Presumably, he is making the assumption that the real volume of unhappiness is around ten times that. Unfortunately, because the death of a loved one is so traumatic, the event itself automatically colours people’s perception of the process and generates complaints that are often quite unjustified (I have had to deal with such in my time). This produces a false picture of the state of terminal care in the country.
Not that all is well in the field of palliative care. Doctors and nurses can be very dismissive of a patient’s wishes. Too often, I have come across a terminally ill patient being treated without any reference to his or her desires or needs. This paternalistic, “we know best” style of medicine is often the default style when medical staff are feeling uncomfortable, or a bit out of their depth. The Doyenne of the Dying process, Elizabeth Kubler-Ross, observed the same effect in her seminal work “On Death and Dying“:
We are always amazed how one session can relieve a patient of a tremendous burden and wonder why it is so difficult for staff and family to elicit their needs, since it often requires nothing more than an open question.
While it is important for a medical professional to be reasonably knowledgeable about the dying process and the patient’s specific disease process, the most important aspect of terminal care is time. It is not something that should be rushed, but requires time spent with the patient addressing their concerns. This is why hospice usually does things better than a hospital – the doctors and nurses in our public hospitals simply have no time. This is my biggest problem with the Liverpool Care Pathway – it is not addressing the root problem of the time-contraints of public hospital staff. Consequently, an instrument such as the LCP is only likely to paper over the cracks and give the appearance of adequate terminal care. The boxes will be ticked. The documentation will be tidy. But the British experience shows that patients and their families will still be unhappy because what they really wanted was someone to listen to their concerns, not someone to treat them. As Kubler-Ross puts it:
When a patient is severely ill, he is often treated like a person with no right to an opinion. It is often someone else who makes the decision if and when and where a patient should be hospitalized. It would take so little to remember that the sick person too has feelings, wishes, and opinions, and has– most important of all– the right to be heard. Kubler-Ross, E.. On Death and Dying.