Originally published in Stuff, 1 February 2016
Dear Stuff community,
As a doctor, I do not support legalising assisted dying.
I recognise that people on both sides of this debate have compassion for people who are suffering and want to help them. The main difference in opinion is the way in which we think our society and government should go about that. We all value autonomy/choice, although I would add that it is not the only ethical principle at play. This issue is complex and multifaceted.
I also realise that this issue is a deeply personal one for many people. However, I do not believe the effects of a law which provides a mechanism for assisted suicide will only affect those who choose to use it.
I am speaking as a doctor who has cared for people with terminal illnesses and debilitating chronic illnesses both in general practice and the hospital setting. I have, at times, visited patients in their homes to provide symptom relief and other support as part of a palliative care service. Providing support for patients with end-stage cancer and other disease is a weekly if, not daily part of my job.
I am grateful to live in a time when great progress has been made in palliative care. From what I have seen and what I am told by others with more experience in palliative care, it is rare for people to die in physical pain or suffering from other unpleasant symptoms (such as nausea or breathlessness) as these can usually be controlled with medication. For those reading this who have watched a love one die where these things were not adequately addressed, I am sorry that you and your loved one went through that. Better access to doctors and nurses skilled in end of life care may have prevented this.
However it is important to note that less than a third of patients requesting assisted suicide in Oregon in 2014 did so because of pain or fear of future pain.
Unfortunately the data from Oregon does not separate those who were actually in pain versus those who were fearful but not yet experiencing pain and it does not given us an idea of the severity of the pain or how much it was contributing to the request (as multiple reason were given in most cases). Many more euthanasia requests are for loss of autonomy or not being able to participate in life events they find enjoyable. I do not want to minimise these losses, as they are significant, but it a false argument to make pain the main issue.
Palliative care also brings hope into a difficult situation by helping patients find meaning in life even when their bodies are fading and restores dignity. Hospice care (whether it is delivered in a hospice building or a persons home) has a holistic role in addressing both physical and non-physical pain. Those working in palliative care journey along side someone who is moving toward death. A person’s views on what is essential to have a good quality of life can change when they are presented with new challenges of physical limitations. Palliative care also provides support for friends and family. From my professional experience we have an excellent palliative care service in New Zealand. However there are still gaps and more funding could help fill these. One consideration is will the focus and funding for palliative care be eroded if euthanasia becomes legal? Why try so hard to alleviate pain and help someone live well if the seemingly easier option of ending their life is available?
I also think doctors and their patients would benefit from an even larger emphasis and more training in palliative care. Any form of legal assisted suicide that involves the medical professions will undermine the palliative care services that care for those who are dying. I am not alone in this thinking: both Hospice New Zealand and the Australia and New Zealand Society of Palliative Medicine share this view.
I would also add that more support is needed for those who are disabled or suffering from chronic medical conditions. We need to properly assist living before we even contemplate assisting dying.
I believe introducing euthanasia will forever change the doctor-patient relationship. As doctors, our role is to care for patients and to be their advocate. Offering an accelerated death is in conflict to that. I want my patients to be able to trust my intension is “above all, first do no harm”. In some cases euthanasia may seem like the easier, cheaper (in terms of health dollars spent) option which busy health professionals under pressures in a stretched system may be inclined to push patients and families toward. This is not a power that myself or many of my colleagues want.
Let me be clear, I do not support attempting extending life at any cost. I have spoke to patients, countless times, often alongside their families about ‘do not resuscitate’ orders and signed these with them. I am an advocate for advance directives. I have explained to people that they do not need to accept treatment for life threatening conditions if they choose not to. I have, alongside my senior colleagues, decided not to admit a patient to intensive care for invasive treatment. This was because patient had an acute problem, as well as advanced age and serious chronic medical conditions, and was very unlikely to respond to even the most sophisticated modern medicine.
I have prescribed morphine, midazolam and other medication for pain and other symptoms, knowing it is possible that it will have a negative effect on breathing but with the intention of allowing a patient to continue with as high a quality of life as possible. I have used end of life care plans for people who appear to be in their final days of life (and at times have had to stop this approach when the person improved spontaneously).
However this process of refusing or withdrawing certain treatment is fundamentally different to intentionally hastening death by artificial means. This is in line with the New Zealand Medical Association and the World Medical Association’s views on this issue.
Another reason why I oppose a law allowing assisted suicide is the contradictory message it would send about suicide compared to suicide prevention. We are telling saying for one group of people it is OK to take their life and we will help them and for another group of people that it is not OK to end their life. This is a double standard – often based on a person’s ability. We should not treat suicidal thoughts in people who are disabled or have an illness differently that those who are physically healthy.
There is evidence that there is an association between depression and request for euthanasia. The proposed bill has no safe guard in respect to this and even if it did it would be impossible to police. In 2014 in Oregon only 2.9% of patients were referred for psychiatric evaluation. Given that 1 in 6 people experience depression during their lifetime and serious or chronic illness is widely regarded as a risk factor for this, it is hard to believe so few people were depressed. From a GP perspective it is not always easy (or possible) to spot depression, especially if someone is trying to hide it.
People who are advocating for a law change often talk about the unbearable misery that people with chronic disease live in and that it is compassionate to end this. Many physically well people who have depression feel that their suffering is unbearable too and they may not be responding to treatment as fast or as satisfactorily as they like. What then is to stop us extending this law to include them as they have done in the Netherlands?
Doctors can get things wrong. Even if we had the best system in the world (and I think we have a pretty good health system), wrong diagnoses are made. Medicine is inherently complex and sometimes we read the shades of grey wrong and reach an incorrect conclusion. Even the majority of the time when doctors get the disease right, we generally are poor at predicting what the course of that disease will be.
It is not uncommon (I can recall two cases in the last month or so) for a patient that specialist have told have only days or weeks to live are still spending meaningful time with their families months later. I’ve had patients that myself and other colleagues thought had a short time to live and admitted to hospice inpatient care, who later recover and return to living in their own home with support.
In order to practice euthanasia society needs to determine that certain lives are not worth living (or have no boundaries and allow anyone to access assisted suicide). To me this represents a shift in society in a direction that is harmful. Is it surprising the disability rights groups oppose this? I think legislation which aids certain people in ending their lives will actually lead to an increase in suffering as it will increase the focus in society on independence, ability, youth, and not being a burden. This will, in turn, lead to increased suffering for the vulnerable in our society.
I too often hear my older patients telling me that they are of no use to anyone, that they are a burden. There seems to be a correlation between this sort of statement and lack of involvement of family or friends. Many of them are clinically depressed. This deeply saddens me and I wish we had that same level of respect for our seniors that many other societies do. As a Pākehā, I think we have a lot to learn from how many Maori whānau both care for and value their kaumātua and kuia. My elderly patients often teach me much and I’m sure their presence is adding to the much to the richness of life for those who know them far better than I.
If assisted suicide was to become legal, I can see how many older people will feel pressured to take this option (either with subtle pressure from some family members or from a society that values youth and independence). Most older people have a long-term health condition that some would argue is grievous and irremediable and therefore would be allowed under the proposed End of Life Choice Bill.
This will affect, not only the elderly but also those who are disabled or living with a condition that requires costly treatment. As a general practitioner I think this coercion will be impossible to detect and therefore cannot be readily safe guarded against.
I also think it is dangerous giving doctors the power to decide who can be killed via assisted suicide (even if it aligns with the patients wishes) and who cannot. In general doctors have the right motives and want the best for people. However alongside this, doctors also can have a tendency to think they know better than the patient in certain circumstances. The doctor-patient relationship isn’t a level playing field. The doctor has knowledge and can provide access to treatments while the patient is experiencing (often unpleasant) symptoms and may be frightened of what lies ahead of them. As much as we try (as we should) to minimise this, there will always be an inherent power difference.
Therefore I can see how some doctors, if euthanasia was legal, feeling that they are acting in the patient’s best interest, will perform euthanasia without request. This is what we see happening in Belgium where about a third of deaths fall into this category despite it being illegal. Anonymous surveys need to be used to collect this information as most of these deaths are not reported to those regulating euthanasia.
Our current law makes assisting someone to die a crime. However the courts have the option (which they have exercised previously) to apply leniency to the exceptional cases where this could be morally justified. This debate is not about if you have the right to take your own life but if the state should help you to do so. Suicide (without assistance) is currently legal.
The proposed bill is actually very vague and it is hard to imagine what conditions it wouldn’t cover under the “grievous and irremediable medical condition” provision. Even if mechanisms are created to restrict this, if assisted suicide becomes legal for certain conditions it is difficult to see how it is not extended to other groups, such as those under 18 (as has happened in Belgium). Some of our laws are by the letter quite restrictive but in practice applied in a very loose manner. These systems are also very difficult to police and reply on volunteer reporting that we know is inadequate.
In medicine we do not prescribe or advocate treatments that are more likely to harm then help. My perspective as a New Zealander and doctor is that euthanasia or assisted suicide will cause great harm. I don’t believe the safeguards will ever be enough.
For a lot of Kiwis the issues comes down to choice. Autonomy and self-determination are valued highly in our society, which for the most part, is a good thing. However I am not convinced that they should always trump all other ethical principles. Making it legal for someone else to help people take their life will impact many more than those who wish to be directly involved.
“Our society must make it right and possible for old people not to fear the young or be deserted by them, for the test of a civilisation is the way that it cares for its helpless members.” – Pearl S. Buck (Nobel Prize for Literature winner and advocate for minority rights), My Several Worlds .