Dignity is actually a manifestation of how you conceive yourself or personhood. Personhood is what makes you you and dignity relates to how you want to protect that identity, if you like. So there are two parts to how you would view dignity at the end of life, one is how you view it individually, from yourself, the other is how society views it. So, for example, if I was taken unconscious to a hospital, no family member, then I would be cared for to a standard or to an expectation of what that society that I was found in would care for a patient. But if I was conscious then basically what I would say is, ‘Look, I don’t want this and I don’t want that.’ For example, I have patients from various cultures and I’ve had patients who have said, ‘Look, my dignity, who I am as a person is defined by my religious beliefs,’ and some of them have actually said, ‘Look, I know you want me to be as comfortable as possible but I don’t want to be. I want to have some pain because I am paying off my karma.’ I have had patients who say, ‘I know society or your hospital or your doctoring team would like very much for me to be comfortable in a hospice and looking after my needs but that’s not what I want. What I want is to be at home. I know I won’t get the care that I need, I know I will need my family to care for me a lot more but that’s who I am.’
So we did a heck of a lot of work into oncology patients first to find out what makes them who they are or how they conceive themselves. We also did that with palliative care patients in a second study. So with a grand total of about 150 interviews we found that patients actually conceived themselves in four dimensions. The first dimension is innate personhood, that means I am a person for as long as I am alive. I am a person because I have a connection with God or, if I’m not particularly religious, I’m a person because of my genetic make-up. I am a person because I’m a human being, that’s it. But there’s another part to the innate personhood – I’m born into a family and that family may be Hindu, for example, they might teach me different values but this part of the innate personhood changes. I can change my gender, for example, I can change my religion, I can change my culture to a certain extent. So that’s personhood in innate personhood.
The second part is individual personhood. Individual personhood is what we call our personality, our characteristics, what makes us who we are, if you like, what you see as my personality. It has my conscious function, so my ability to communicate and everything else, but it also has my ability to communicate my characteristics, my wishes, my values. So there are two parts, two relation parts. The individual ring basically talks about conscious function. When we’re looking at patients who are dying that conscious function isn’t there all the time and it does recede a little bit. A significant number of patients at the end of life are not conscious and so we ask our patients what happens when you can’t communicate and they tell us something quite interesting which distilled shows us two more rings of the personhood.
There is the relational ring, the third ring. The third ring contains, in theory, your family but not always - it could be your best friend, it could be your lover, it could be your colleague that you share significant stories and a lifetime with. These people are different in the sense that as much as you are important to them, they are important to you. There is an interchange of importance. These guys, these people, are the people that will preserve your personhood when you can no longer do that. These are different from the people that may be acquaintances, people you meet in the bar, you talk once in a while and that’s it, distant relatives, friends that you may not have contact with anymore. These guys then form the societal ring, the last ring, and they set the standards. So, for example, I’m found unconscious in a country I’ve never been to or I don’t live in and these people, the society, set the standards in which I will be cared for. What does that mean in practice? It means that when we look after patients who are dying, when we are looking after our patients throughout their illness journey, we need to be conscious about what they want, what makes them who they are and what do they want to be preserved? It has massive implications on advanced care planning, advanced medical directives, wills, but it also has implications upon where you want to be cared for, how do you want to be cared for?
What we also found over the last year or two was that your concept of personhood at the start of an illness may not be what it is at the end. I’ll give you an example: we had a patient of ours, he was 32 years old. He had become a drug addict because his pain hadn’t been controlled and it was only after he was arrested and went to prison did they find out that he had a massive rectal tumour. His goals of care were interesting in the sense that initially all he wanted was pain control because his whole life was pain. It had robbed him of his relationship with his children, he had two young children, and he wanted to be comfortable and he would go anywhere with it. When the palliative care team got involved and we treated him and supported his family and made sure they had a significant amount of support, psychosocial as well as financial, his goals of care changed, he wanted to be at home with his children, his two daughters. That’s a sign of how we look at ourselves and you might say, well actually that’s just a different change in goals, but the reason why he wanted it was because he wanted to be remembered by his daughters in his own house, in his own bed, being able to talk to them when they wanted to crawl into the bed when they were scared in the middle of the night. So that’s a little bit about what we do.
So how is that practical? How does it translate into practical care? One of the things that we do do is that we’ve adapted Chochinov's Dignity Inventory and we use those questions to ask patients, ‘Tell me about you and how I can give you the best possible care? What is it about your life that you’re most proud of?’ Questions like that, there are about 22 questions, but we do do that and we do it regularly. So we can assess patients as they go along and it’s interesting because as we do that we get to know our patients really well, we get to know what the psychosocial issues are behind what they have to deal with. Singapore is a Confucian society so the family has significant play on where you’d be cared for, how you’d be cared for, what sort of treatment you get. For our patients what we are finding is, yes, family is important but family isn’t the only thing. What we found as well was that we found that our elderly patients conceived a personhood very differently from patients who were maybe in their mid-30s or 40s. For the patients in the mid-30s and 40s what’s important is being alive and communicating with their family and being happy, for want of a better word. For the elderly patients it’s about autonomy, being able to make those decisions, being part of the care team, its decision making process, being conscious, being able to care for yourself. It’s very different and it’s something that we’re hoping to publish in the next year or so.