In Aotearoa/New Zealand the End of Life Choice Act 2019 will be enacted into law on Sunday 7th November 2021. Written in the voice of someone who is considering accessing assisted dying is a further conversation that they might have with NZ Hospice/Palliative Care, if only they would deign to listen.
The last time we talked I was not at my best, I was angry, upset and scared. I’ve had time to reflect and have looked at things from some other viewpoints. This is not an apology because I need you to see me as I am, I don’t want to have to pretend in front of you. I need you to understand how I feel, and what I am going through.
Thank you for not running away, like the others did. You said that you have similarly emotionally intense conversations all of the time, and that you have been trained to be able to handle them. You certainly used it to take the opportunity to get to know me better, and to explore my fears.
That being said, I shouldn’t have sworn at you, that is not me. I am usually much better at controlling myself. My anger was not just directed at you, I’ve been through many frustrating interactions during this illness journey, and it all just exploded the last time we met.
Over the years I have been privileged to share some meals with a visiting Lama from the Tibetan Buddhist Faith. Rinpoche is based in Scottsdale, Arizona, USA but regularly visits New Zealand. Dinners with Rinpoche are always very interesting and he has many stories to tell. Given my own professional interests, the topic of death and dying often comes up. During one of those conversations Rinpoche shared a related story about one of his late American friends.
As many of you would know the Royal Australasian College of Surgeons has recently released its expert advisory group Draft Report into discrimination, bullying and harassment in surgery. The results of the report are confronting even if they are unfortunately not altogether surprising.
This is advice I give to people starting out in advanced training in palliative medicine (or geriatric medicine, my other training specialty) when asked about research projects*. It may also be relevant to other clinicians wanting to start out in research. The advice is based on my own experience and from talking to other trainees. One-hundred hours into your project, you do not want to discover that your study design is flawed or your results invalid. This advice may help to prevent that.
Your research supervisor does not need to be the same person as your clinical supervisor. Unless your clinical supervisor is also a researcher, I would advise looking for someone else to supervise you, who has a research background. They do not need to come from your specialty or profession (although obviously some familiarity with your broad research topic is important). They may be based in a different city or country (although it may create complications with ethics approvals if your supervisor is from different institution).
Your supervisor can guide you through your study design. This improves the likelihood of producing valid results, which you can then publish and add to palliative care knowledge for the benefit of palliative care patients (because this is why we’re doing this research thing, right?)
If you’re not sure where to start looking for a supervisor, ask an academic in your field if they can recommend anyone. If you want to do palliative care research, the Palliverse researcher database is a good place to start.
Librarians are very helpful. Most hospitals or health services have librarians who can assist you to use search engines, citation managers and other programs more efficiently. The library probably has resources that you don’t even know about.
Professionally when “Ethics” is mentioned it is usually in fairly specific ways. In a health care context Ethics is often associated with particular areas of question or conflict. Ethics is the process that we have to satisfy to be able to do the research that we think is indicated. My decision about whether Mr Smith has the “right” and the “capacity” to be able to make a particular decision is an ethical one. I use words like “autonomy” and “justice” to explain the reason why Mrs Tran should be offered a treatment. Our clinical teams have policies about our duty to provide ethical care for violently confused patients. We debate about issues like euthanasia on grounds that we describe as ethics focused on the rights and wrongs of changing our current clinical approach. Each of these are complex questions and the fact that they are so divisive demonstrates to us the difficulty (or even impossibility) of determining a path forward that satisfies everyone. Sometimes I wonder if it is for this reason that Ethics seems like such a frustrating topic. Why spend time thinking and talking about Ethics when the only thing we can be confident about is that someone’s answer is always going to be, “I disagree”?