8 September 201529 September 2015 Main Posts / Dignity Not the final chapter Matilda Whitworth I have always been a staunch advocate of euthanasia and physician-assisted suicide. I believed that people suffering from terminal illnesses have the right to decide how and when they die, and was not convinced by the arguments presented by the opposition, which mostly comprised of religious groups espousing the ‘sanctity of life’. During my medical student rotations I saw people die in ways that could not be described as ‘good’, many of whom I felt would have benefited from euthanasia had they been given the choice. Euthanasia was something I hoped would be legalised before my time to die arrived so that I could make use of it if I needed to. But now I am not so sure. As someone who once worked in research science, ‘paradigm shifts’, or changes in basic assumptions, are not all that uncommon. In my own lifetime, the belief that stomach ulcers were caused by stress has been completely turned on its head by two fellow West Australians and their bacteria-drinking experiments. These kinds of changes I am prepared for, even excited by, as they advance our understanding about how the world works. So it took me by surprise that I felt so unsettled about my own personal paradigm shift: that my belief in euthanasia was perhaps not as unshakable as I thought it was. In an attempt to understand these feelings, I decided to explore why my opinions about euthanasia and physician-assisted suicide have changed, and why I am now unsure about whether it is something I would engage in. Over the past year I have had my first exposures to palliative care: medical rotations in geriatrics and oncology, and a palliative care rotation in a hospice. I also saw my father-in-law undertake palliation for metastatic oesophageal cancer. I had always known that palliative care existed, but wasn’t aware of the breadth of services on offer (not only the control of unwanted symptoms, but also psychological, social and spiritual support) until I was right there seeing it happen. There were many patients whose stories could help explain the incredible work I saw, but for simplicity and privacy I have decided to combine a few. This is the story of Lucy (not her real name), a middle-aged lady who refused treatment for her incurable bone cancer. Once energetic and full of life, she began to deteriorate over a period of months until eventually she decided to accept a bed at the hospice. Here, her pain was managed using both opiate and non-opiate methods. A base level of medication (first orally and then through a pump when she could no longer swallow) gave her constant relief, and further top ups were available when she experienced pain that not even the base level could alleviate (what is known in palliative care as ‘breakthrough pain’). Medications were also given to relieve a number of her other symptoms: Maxalon to stop the feeling of nausea, haloperidol to reduce her anxiety, and eventually Buscopan to reduce the secretions that pool when the patient no long can swallow (producing what is known as a ‘death rattle’). In addition to the medications, Lucy and her husband received counselling and continued to participate in the activities that gave her life meaning, such as listening to music and having visits from her dog. An advance care directive was made so that when Lucy could no longer speak, her wishes would be followed and she would remain in control. If she contracted an infection, she did not want to be treated with antibiotics. If her heart stopped, she did not want to be resuscitated. After a few weeks at the hospice Lucy began sleeping through the day and eventually lost consciousness. Every day her husband sat by her side, and would move her feet into the sunshine so she could feel the warmth on her skin. As the days passed her breathing became irregular (at times shallow and rapid, at other times barely there), and apart from the occasional flick of her hand she remained still in her bed. At this time she was expected to only live for a few more days. Instead, she lasted for weeks. When I first met Lucy and her husband she not had food or water for over two weeks. While this might seem like an incredibly insensitive thing to do, it does not cause the patient any grief and is in fact a very peaceful and pain-free way to die. I like to compare it to the way many animals behave: eating and drinking less while sleeping more is a natural instinct when they sense their time is near. Speaking to Lucy’s husband, I learned that he had not left her side since her condition had worsened, not even to visit their home to collect new clothes. With the passing of each day, it was evident that he was becoming increasingly tired and desperate. Eventually, he expressed to the palliative care team his wish that euthanasia were legal so that he could end her suffering; euthanasia was something he and Lucy had discussed together before she had lost consciousness. Given this belief, it struck me as incredible that after Lucy had finally passed away, her husband explained that he was grateful that euthanasia had never been an option. As well as being comforted by the fact that Lucy had never been in any pain (as was explained to him by the team), he had discovered, like many before him, that even though watching a loved one die is incredibly painful, caring for them during this time is an important part of the healing process. A few days after Lucy died I was at the Perth Writer’s Festival, where I was fortunate enough to hear writer-doctor Terence Holt talk about his book Internal Medicine. When question time arrived, a member of the audience asked him about his feelings on euthanasia. Dr. Holt explained that as a geriatrician his patients often asked him about euthanasia, but that once he had spent time with them exploring and allaying their fears, their initial enthusiasm for euthanasia disappeared and they no longer felt it was a necessary option. This sentiment resonated with me as it reminded me so much of the experience of Lucy’s husband: once his concerns had been explored, he no longer felt that euthanasia was a necessary option. One of the themes common to many pro-euthanasia discussions is ‘dying with dignity’. As someone who has now seen their fair share of death, I would argue that every patient I saw at the hospice was dignified, even if they had lost their memory or control of their bowels. Similarly, every death I saw could also be described as dignified: the patients were at peace, medical interventions were limited to those that relieved suffering, and on most occasions their loved ones were present. Perhaps before considering introducing euthanasia we should look at redefining ‘dignity’ instead. Is a baby inherently undignified just because it can’t clean up after itself or tell you what it ate for breakfast? If not, then why should we think any different about a terminally-ill patient? I believe that dignity should be defined not by how much function a person has left, but by how they embrace the life they have left and cope with the process of dying. Additionally, family and medical staff have an important role to play in preserving patient dignity. The more a patient’s value is affirmed (for example, by seeing them as a person rather than an illness), the more their sense of dignity will be upheld. A related reason for the request of euthanasia involves patients not wanting to die in pain. In his book Dying Well, palliative care physician Ira Byock states that ‘in the minds of too many people today, the answer to unbearable pain among the dying has become assisted suicide or euthanasia, as if effective pain treatment did not exist.’ As indicated by Dr. Byock, and as is evident in the treatment of Lucy, effective pain relief is one of the mainstays of palliative care. In the majority of cases, the experience of uncontrolled pain while dying is something that does not have to be tolerated. Another supporting argument for euthanasia is that people do not want to be a ‘burden’ on their families. Maintaining patient dignity also comes into play here: patients who feel their lives have meaning and worth are less likely to feel like they have become a burden. In addition, as seen in the case of Lucy, caring for the dying can be an important part of the grieving and healing process. During my time at the hospice, there were numerous occasions in which caring for a dying family member strengthened relationships or even brought fractured families back together. It was also described by many families as something they both wanted and needed to do. As Ira Byock states, ‘caring for a dying loved one is a powerful way to express love, devotion and reverence.’ While it is undeniably important, I acknowledge that looking after someone who is dying may be difficult for some people. Many people cannot take time off work, while others feel they cannot cope emotionally or (in the case of elderly partners especially) may be too frail to do so. It is in these circumstances where hospices, counselling and community palliative services can make a big difference. Advanced care directives, such as the one Lucy had in place, can also make life easier for families: there are no difficult decisions about what their loved one may or may not have wanted if they have already been informed. The euthanasia and physician-assisted suicide debate not only involves patients and their loved ones, but also the doctors who would be responsible for prescribing and/or administering the lethal medications. Prior to studying medicine, I did not think much of the argument that asking doctors to carry out euthanasia violated medical ethics, particularly the maxim: ‘First, do no harm.’ My belief was that letting a suffering patient live when they did not want to constituted doing far more harm than good. However, having now seen palliative care in action I can appreciate that not only are there effective alternative means of reducing suffering, but also that the act of deliberately ending a patient’s life may have a profound impact on the doctor. In the article ‘Emotional and psychological effects of physician-assisted suicide and euthanasia on participating physicians’ published in the journal Issues in Law and Medicine, the authors conclude that ‘many doctors who have participated in euthanasia and/or physician-assisted suicide are adversely affected emotionally and psychologically by their experiences.’ Only months away from becoming a doctor, I can completely understand this: deliberately ending the life of a patient you have come to know intimately would be a harrowing thing to do. Another thought-provoking article ‘Clinical problems with the performance of euthanasia and physician-assisted suicide in the Netherlands’ published in the New England Journal of Medicine, showed that 3 to 16 per cent of patients undergoing euthanasia or assisted suicide experienced complications in the process, which included vomiting, myoclonus (the sudden involuntary muscle jerking often seen in seizures) and failure of completion. While techniques may have improved since the article’s publication in 2000, it certainly does tarnish the image of euthanasia being a ‘peaceful’ method. Despite my new ambivalence towards euthanasia and physician-assisted suicide, many of my beliefs on death and dying remain the same. I still believe that medicine sometimes keeps people alive for longer than necessary. I believe in giving symptom-relieving medications even when they may shorten life (the so-called ‘doctrine of double effect’), and also allowing the body to die naturally by refusing or withdrawing life-sustaining treatments (for example, by removing feeding tubes or withholding antibiotics, often referred to as ‘passive euthanasia’). I can appreciate the frustration faced by people with intolerable but not life-limiting illnesses who want to end their suffering and cannot, and can understand that for many dying people, the concept of euthanasia provides hope. In fact, the Four Corners episode ‘My Own Choice’ concludes with the following statement: ‘Dignitas reports that in fact a substantial majority of people who get the green light do not proceed with an assisted suicide.’ That ‘simply knowing the option is there renders them able to further endure life and even to enjoy it.’ Overall however, I am no longer convinced that legalising euthanasia will solve all the problems many think it will. I recently bumped into one of my medicine tutors with whom I had had many heated discussions about euthanasia. She asked me how I was, and I explained that I was feeling a little strange because my belief in euthanasia and physician-assisted suicide had been turned on its head. She smiled, and then told me that a similar thing had happened to her when she was a medical student. Once a fierce supporter of abortion, her opinions began to mellow as she started working with couples that had struggled to conceive. Perhaps this is one of the greatest gifts a medical education can give well-meaning but naive students like me. As we are thrown into mad hospital environments and gain lived experience of these contentious issues, our opinions are tempered, enabling us to see beyond the black and white of the issues and appreciate the shades of grey. Matilda Whitworth Matilda Whitworth is a final year medical student who would like to combine a career in writing and community medicine. She has previously written for the Big Issue magazine about her work with Perth's homeless population. More by Matilda Whitworth Overland is a not-for-profit magazine with a proud history of supporting writers, and publishing ideas and voices often excluded from other places. If you like this piece, or support Overland’s work in general, please subscribe or donate. 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