Catholic Health Australia releases new Advance Care Plan
The previous issue of The Nathaniel Report, number 42, included The Nathaniel Centre’s submission to the National Ethics Advisory Committee on the ethical challenges in advance care planning. In that submission we emphasised the need for a ‘process’ that emphasised the ongoing nature of end-of-life planning rather than a narrower approach that focussed largely on the completion of a written ‘plan’. We also highlighted the importance of people reflecting on decisions about care and treatment at the end of life before they become chronically ill.
Some may imagine that the important decisions about end of life treatment are largely ‘technical’ ones requiring the specialist knowledge and advice of the medical profession. However, while the input of health practitioners provides a necessary and invaluable contribution, there are also issues of a spiritual, relational, social, cultural, emotional and psychological nature that are part of end-of-life planning. In particular, it is advisable to include those people who will be most deeply affected and who are likely to know us best – our family, whanau and aiga as well as significant friends.
The process of advance care planning can also be a good time to think about our willingness to become an organ donor.
In response torequests about advance care planning, Catholic Health Australiahas recently released two guides; one for people considering their future health care needs, and another for health care professionals. The guides are described as being consistent with Catholic principles as well as with good secular ethics. The documents have been approved by the Committee for Doctrine and Morals of the Australian Catholic Bishops' Conference.
The guide for people considering their future health care provides advice on a range of end-of-life issues. Because illness, disease and other life events are unpredictable, the document stipulates that it is best to provide general guidance about future medical treatment rather than specific directives. It also promotes the idea that the ‘planning’ take the form of an on-going conversation with family, friends and health care professionals.
The material features a discussion about choosing a representative in the event a person becomes unable to make decisions for themselves, as well as ideas for how to go about advising that person. The document underscores the responsibility we all have to protect and sustain life and details when treatment might be refused. It provides a good concise summary of the ethics concerning treatment which is futile and ‘overly burdensome’, what the Catholic tradition often refers to as ‘extraordinary’ or ‘disproportionate’. Treatments are burdensome when they cause distress and suffering for a person, cause difficulties for the person or their family (or the community) or are costly to obtain or provide. Persons are encouraged to clarify the burdens they would find acceptable.
Critically, the document notes that in light of the continuing debates over euthanasia and the withdrawal of medical treatment, it is important for a person to state explicitly that they do want life-sustaining treatment that is reasonable to be provided unless it becomes futile or is overly burdensome. The provision of food and water is part of the normal obligation to care for a person, even when a tube is required, so long as the food nourishes and /or alleviates suffering. The risk of choking, the failure to digest food, or the discomfort of a tube are all reasons which may make the use of tube feeding overly burdensome.
Finally the document provides ‘a model statement for future health care’, which can be used as it is or to begin a discussion about end-of-life planning with a person’s designated representative/s.
The document has been designed in a way that makes it easy to follow and it is appropriate for persons receiving care in any facility. While written with a Catholic audience in mind, it is equally suitable for persons of all faiths or none.
There is also a New Zealand website that provides advice and suggestions for starting up conversations about advance care planning: http://www.advancecareplanning.org.nz/
The New Zealand Advance Care Planning Guide, as well as providing guidance for planning advance care, provides information about your rights as a patient and the legal issues as they exist in New Zealand. http://www.advancecareplanning.org.nz/assets/Advance_care_planning_guide.pdf
Bringing Dementia Patients to Life
An insightful article on dementia written by Richard Gunderman: "a dementia diagnosis is not the medical equivalent of falling off a cliff" because there are many things that can be done to bring life to persons with dementia.
Kate’s Story: “The person inside the person with dementia”
Wednesday 15 January was an ordinary, sunny day at Cornwall Park Hospital. The residents were waking up to eat their breakfast for the day. Bur for one of our residents, this day would be unlike any other for quite some time.
When Jenny Smith (not her real name) woke this particular morning, she would be free from her crippling and cruel dementia. The staff were aware of the change from the very first moment they entered the room. Her usual furrowed brow was no longer so; in fact her features were very different; soft and loving. Her usual colourful language was replaced with words of kindness and joy. The staff bought her out into the dining room and for the first time in over a year she sat upright at the table and used a knife and fork to enjoy her breakfast.
This lady and I have an incredibly deep bond. I had been working here just a few days when she learnt that if she shouted my name I'd be straight there to give her anything she wanted, and so she did repeatedly 'Kate, Kate' morning noon and night. As the time went on I'd spend my working days with Jenny right by my side. I'd live for those moments when she'd briefly surface and I would get a hug or a kiss but those moments were few and far between. Jenny has a unique way of speaking, she comes up with the most imaginative and funny insults and phrases, just one of the reasons that I had come to love her so dearly. That being said, her high level of dementia makes her very troubled and highly distressed.
So when I walked into work that morning several staff approached me to tell me of the wonderful news. As I walked into the lounge there sat my companion with the sunniest of dispositions chatting with the nurse. As she looked over at me we both started to cry. She looked just like the lady in the pictures I'd seen of her before entering the hospital, she looked 10 years younger. She threw her arms out to me and we embraced like old friends who had been apart for too long. She put her hands around my face and studied it a while before saying 'take me to the garden there is much to discuss'.
I took her out into the sunshine and we sat by the rabbit cage as we so often did. Two of the other staff accompanied us as none of us wanted to miss a moment spent with the real Jenny. She discussed personal matters of importance such as which charities she'd like to donate her jewellery to and the health of family members. She could remember things I'd told her in detail such as my boyfriend's name and his profession. I was so overwhelmed at her memory and conversational skills; sometimes you wonder if the person inside the person with dementia is taking in what you are saying. It would appear from Jenny's awakening that they absolutely are. She took my hand and said to me; 'sometimes I'm so very cruel to all of you but none of you ever turn your back on me, from now on when I say the 'f' word I want you to imagine that I'm telling you how much I appreciate all of you.' I was sobbing almost uncontrollably at this point, I wanted to tell her how much she meant to me but the words wouldn't come out through the tears. She took the tissue out of my hand and dried my eyes and said; 'I have a lot of love for you Kate, I want you to always remember that'. At this point the other staff had gone back inside and we were alone, she lowered her voice and said to me; 'please answer this honestly Kate, I know you won't lie to me,' I nodded. 'Will the dementia return?' Sadly I nodded my head again, 'then how long do we have together?' I told her that I did not know, it could be a few minutes, maybe a few hours but we would cherish every second we had together. At this point she cried and told me that she badly wanted to stay. I told her I'd spend all of my prayers and wishes trying to make it so.
That afternoon Jenny's son and I took her out of the hospital. We drove her to the beach and she told me stories of when she lived there. We took her to church and she was overjoyed that all the features were just as she remembered them. After that we had afternoon tea and some of her family and friends came to visit with their children which Jenny was so pleased about. However, we could see that she was getting tired and were aware that we could lose her at any moment.
We got back in the car and I sat in the middle with my arm around her and she lay back against me. She kissed my hand and held it tight as we passed the beach where she had grown up. She said she'd never seen anything so beautiful and softly fell asleep. I held her tight to make sure she felt loved and safe.
She woke around 15 minutes later and bit into my arm with ferocious anger. We were all too aware that the dementia had returned. Her screams were louder than ever as we took her back into the hospital.
To this day, she has never resurfaced. She won't hug me and is repulsed when I kiss her cheek. No matter what happens, I'll always remember that a miracle happened at Cornwall Park hospital on Wednesday 15th January and I know that deep down in that person with dementia is a vibrant, intelligent and loving woman trying her best to tell me that I'm appreciated. And my goodness do I love that woman.
Kate Burnett is the Activity Officer at Cornwall Park Hospital, Epsom, Auckland.
This article first appeared in Dementia Care Briefing for Bupa NZ employees, Issue 14, March 2014 and is reproduced with the kind permission of the author and the resident's family.
Child Poverty and Euthanasia: joining the dots
Sue Buckley and John Kleinsman
Child poverty and euthanasia are potentially risky topics for politicians in any year, but especially in an election year. The decision late last year to remove the End of Life Choice Bill from the private members ballot lest it become a political football is a demonstration of this caution. Is there a connection between these two contentious topics? The naming of the End of Life Choice Bill points to a possible link between the two, that of 'choice'.
Over recent decades the notion of 'choice' has been widely adopted in economic and social policy discussions, with human actors now widely viewed as autonomous individuals who have a fundamental right to make decisions on the basis of their own interests, whether in health, education, career, or lifestyle. Lifestyle decisions, such as what they spend their money on or how they spend their time or the sort of job they do, are seen as choices freely taken from a smorgasbord of options.
We have also come to view people's particular social and personal situations, including their unemployment and health status, more and more as the product of their prior choices. Without question, many people who are the recipients of a State sponsored benefit receive it because of circumstances beyond their control. Even when it seems that a person's situation may be the result of so-called 'bad choices', it remains the case that their personal choices cannot always be separated from the limitations imposed on their personal freedom by structural constraints beyond their control that define their particular societal and familial context.
As United States academics Kelly Brownell et al note, reflecting on whether we should pursue punishment strategies as a way of dealing with people who are obese: "environmental conditions can override individual physical and psychological regulatory systems that might otherwise stand in the way of weight gain and obesity, hence undermining personal responsibility, narrowing choices, and eroding personal freedoms."1
Despite this fact, the overly simplistic view that people are essentially 'responsible' for the situation they find themselves in continues to shape the development of social benefit policies in many countries, including New Zealand. Thus, for example, where once it was held that benefits for sole or unemployed parents should be set at a level that would enable recipients and their children to participate in society like everyone else, now parents are exhorted to 'work their way' out of poverty. Consequently, those who are not able to achieve this become prone to seeing themselves, and to being seen, either as 'outsiders' or, at best, as 'unworthy' members of society.
In line with this, the notion of citizenship has also shifted over time, with a greater emphasis now on 'active citizenship' rather than 'passive citizenship'. While passive citizenship focuses on the rights that are inherent in being a citizen and belonging to a particular society, active citizenship focuses on responsibilities and obligations as the 'price' for belonging. In an article discussing the relationship between child poverty, child rights and active citizenship, O'Brien and Salonen2 use the following definition of 'active citizenship': "A new ideal of citizenship or a new set of rights and duties based on a conception of a claimant (eg an unemployed person) as an active citizen. The active citizen is granted more autonomy and choice but in return is assumed to be self-responsible, flexible and mobile". It is implied here that the passive citizen should not expect to have the same rights or receive the same rewards. The subtle but powerful message is that those who, for a variety of reasons, do not work are 'second-rate' citizens because they 'reap the bounty of others' hard work'.
There are, of course, positive aspects to both views of citizenship; the concept of the 'passive citizen' is in the first instance associated with rights to food, shelter, work, free speech and so on, that are part of the inherent dignity of being human. Meanwhile the concept of 'active citizenship' is associated, in the first instance, with the relational responsibilities all human beings have towards each other, including the duties associated with contributing to the functioning of society and to one's own and one's family's wellbeing. However, an overly narrow focus on 'active citizenship' carries the risk of overlooking or disregarding those citizens who are, for any number of reasons, unable to be 'active'.
O'Brien and Salonen argue that changes in welfare policies over the last two decades in New Zealand have increasingly been based on the notion of 'active citizenship'. The setting of benefit levels and provision of tax relief for families have been intentionally designed to ensure that there is a clear economic advantage in working rather than living on a benefit. While this helps support 'working families', as noted above, it is also intended to encourage citizens to 'choose' work over unemployment. However, one of the unintended consequences of this policy shift is that those who are most vulnerable, children, the sick, the elderly and those with disabilities, who are not able to make such choices, are not just overlooked but become casualties of policies designed to reward and sustain the 'active'.
As O'Brien and Salonen note, the children of beneficiaries do not have a choice about whether their parents are in work or not and, if benefit levels are insufficient, then the children have poverty thrust upon them along with its associated effects on their long-term health and education. All of which means that a policy choice that favours rewarding parents in paid work can only be justified by a calculation that the gains which follow from providing an incentive to work outweigh the needs of the children of beneficiaries. This is clearly a utilitarian argument. Specifically, it neglects the real and immediate needs of many children who are presently living in poverty. It also fails to address the 'unpaid work' of nurturing involved in parenting,
Defining people as 'active' or 'passive' citizens and rewarding the economically active places children, the elderly and the disabled in the precarious position of having to claim rights as 'passive citizens'. In addition an overly narrow focus on the 'active citizen' means that 'passive citizens' become increasingly exposed to social censure. There is ample evidence in the derogatory connotations associated with welfare dependency that 'non-active' citizens are not only held in disrepute by others, but that they soon come to regard their own plight negatively. Consequently, there is little difference between being a 'non-active citizen' and becoming a 'burden on society'.
The use of political rhetoric that divides citizens into the 'deserving and underserving' makes this clear: 'strivers and skivers' (United Kingdom), and 'lifters not leaners' (Australia). Language such as this doesn't just alienate the unemployed, sole parents and other beneficiaries; it alienates all of us because we begin to view these groups of individuals as 'other'.
The focus on 'choice' and citizenship provides a useful lens for making sense of the controversial debate about choices at the end of life. In a society that accepts and emphasises the right and duty of people to make their own individual choices and the importance of taking responsibility for their personal situation, it naturally follows that the fundamental right, and possibly the duty, of the active citizen to choose how they live, should extend to choices about death.
However, the elevation of the 'active citizen' that informs recent welfare policies also risks creating classes of vulnerable citizens who are viewed, and view themselves, as a burden on society. Those particularly susceptible to this are the sick, the elderly and those with disabilities. Being seen as a 'burden' on the rest of society exposes these citizens to the same sort of criticism as beneficiaries and the corresponding weight of guilt that they are 'swallowing up resources'.
A widespread emphasis on individual autonomy and a social policy environment that defends and promotes the right to choose, with little regard to the limits of people's choices, can too easily obscure the negative impact of law changes that are justified on the basis of so-called choice, both on individuals as well as society at large. One outcome of this is that those of us who, through fortune or 'God-given' ability find ourselves healthy and well-off, can easily 'blame' others for their situation, blind to the deeper structural dynamics that inevitably shape and limit the choices people make; we can back away from child poverty and even tolerate it because their parents made bad choices; we can support and even champion the choice for euthanasia or assisted suicide while overlooking the social environment where those 'choosing' to die have come to see themselves as passive citizens, that is, as unworthy consumers of valuable and increasingly scarce resources – as 'lives unworthy of life'.
Supporting policies that allow for 'choice' might appear benign, but in an environment where some classes of citizens are at risk of being viewed and viewing themselves as unworthy or undeserving, providing 'choice' can be a negative and threatening experience. Just as the child of a beneficiary does not choose poverty, so those who see themselves, or are seen by others, as 'swallowing up resources', may find they have no real 'end of life choice' should our society make euthanasia and assisted suicide legal and acceptable options.
Sue Buckley is a researcher for The Nathaniel Centre and John Kleinsman is director of The Nathaniel Centre
1. Brownell, K. D., Kersh, R., Ludwig, D. S., Post, R. C., Puhl, R. M., Schwartz, M. B., et al. Personal Responsibility And Obesity: A Constructive Approach To A Controversial Issue. Health Affairs, 29(3), 379-387
2. O'Brien, M., & Salonen, T. Child poverty and child rights meet active citizenship: A New Zealand and Sweden case study. Childhood, 18(2), 211-226.
Launch of Care Alliance: A coalition to oppose euthanasia and assisted suicide
A coalition, assembled to oppose the legalisation of euthanasia and assisted-suicide in New Zealand, has been formally launched at a function at Parliament on the 20th of March.
The Care Alliance is an umbrella organisation that brings together a wide range of voices from across the palliative, medical, youth, elderly, disability, bioethics and faith sectors who are opposed to euthanasia. It was first established in 2012 in opposition to the poorly written, confusing and flawed End of Life Choice Bill proposed by a Labour List MP which has since been withdrawn following political pressure.
“As long as there is a political intent to legalise euthanasia in New Zealand, we need to be vigilant. The Care Alliance will oppose any efforts to legalise euthanasia or assisted-suicide," said Care Alliance co-founder Maggie Barry. “Although the latest Bill has been withdrawn for political reasons, there remains an active intent to re-submit it to the Ballot at the earliest possible convenience. We will continue to oppose any progress to legalise euthanasia because a law change will inevitably have unintended consequences for all vulnerable New Zealanders and their families, it puts lives at risk and reduces choice,” said Ms Barry.
"Our key concern is the long-term consequences for public safety. This is not an issue for just a few. Regardless of personal beliefs, all New Zealanders would be affected by the public safety consequences of legalising euthanasia and assisted suicide," said Dr Sinéad Donnelly, a palliative care physician. "Legalising euthanasia goes against the core values of the medical profession and will radically change the doctor-patient relationship, ultimately undermining good clinical and palliative care. It will devalue the lives of the elderly and people living with disabilities, and increase the risk of abuse among the most vulnerable New Zealanders,” said Dr Donnelly.
"No legislation can protect against abuse. The best safeguard against abuse is prohibition,” said bioethicist Dr John Kleinsman.
"Over the coming months, we will continue to have conversations with New Zealanders about their concerns around euthanasia and assisted suicide. The Care Alliance supports increased investment in excellent end of life care and support for those who are dying and for their families. We will work to oppose any law changes that hurt, rather than protect, those New Zealanders who are our most vulnerable”.
For more information visit: http://www.carealliance.org.nz/
It’s out with the old as Christian values fall away
John Dickson reflects on our attitudes towards the aged, and suggests that the rise of Christianity provided a philosophical framework and justification for treating all persons as 'inestimably precious'. He notes the demographic changes that have led to an ageing population and wonders what the accompanying decline in belief might mean in terms of care for the elderly.
This article is available online here: https://publicchristianity.org/library/its-out-with-the-old-as-christian-values-fall-away