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  1. Link to blinding Research Made Simple from July 2013

    If you enjoyed this EBN Notebook you may also like to read the EBN Research Made Simple paper looking at Qualitative data analysis: a practical example. This is available at:

    http://ebn.bmj.com/content/16/3/70.full

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    None declared

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  2. Link to What is qualitative synthesis?

    Readers of this EBN Notebook might like the EBN Research Made Simple paper looking at What is qualitative synthesis? This is available at: http://ebn.bmj.com/content/15/4/101.full

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  3. Link to Research Made Simple

    Readers of this EBN Notebook might like the EBN Research Made Simple paper entitled: Selecting the sample. This is available at:

    http://ebn.bmj.com/content/17/2/32.full

    Conflict of Interest:

    None declared

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  4. To learn more about "hypothesis testing and p values: how to interpret results and reach the right conclusion"

    For more information about Hypothesis testing and p values: how to interpret results and reach the right conclusion see the EBN Research Made Simple paper published in April 2013.

    If you want to learn more about p values see EBN Research Made Simple paper "What is a p value and what does it mean?" from April 2012.

    These are both available at:

    http://ebn.bmj.com/content/16/2/36.full

    &

    http://ebn.bmj.com/content/15/2/34.full

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    None declared

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  5. Link to Research Made Simple

    If you enjoyed this EBN Notebook you may also like to read the EBN Research Made Simple paper looking at Qualitative data analysis: a practical example. This is available at: http://ebn.bmj.com/content/17/1/2.full

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    None declared

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  6. Link to Research Made Simple, on what is a systematic review?

    If you would like to know more about systematic reviews why not read the EBN Research Made Simple paper What is a systematic review? Available from:

    http://ebn.bmj.com/content/14/3/64.full

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  7. Link to blinding Research Made Simple from July 2013

    If you enjoyed this paper and want to know more about blinding read the EBN Research Made Simple paper Blinding: an essential component in decreasing risk of bias in experimental designs available from:

    http://ebn.bmj.com/content/16/3/70.full

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  8. Letter of response to the commentary by Trussardi and Gott on the common aspects of dignity in end-of-life care

    Dear Editor,

    Trussardi and Gott[1] provide an insightful commentary on our integrative review paper on dignity in end-of-life care.[2] They raise some interesting points about the definition of dying with dignity in end- of-life care, some with which we concur and others would view differently.

    People in different cultural, social and historical contexts may understand the concept of dignity differently. However, instead of proposing a standard definition that applies to everyone, the concept of dignity should be understood as consisting of an inherent value, a personal and social dimension. Dignity is inherent to our humanity, meaning everybody has the right to die with dignity. Each individual perceives dignity according to his or her personal culture, beliefs, values and wishes.[2] As such, dying with dignity is a subjective experience that is mediated by social influences, comprised of relationships and encounters developed over the course of ones life.[3]

    To support dignity in end-of-life care, health professionals should keep in mind whose dignity they are going to support; what patients consider important and how they understand dignity, rather than assume they can apply their own professional perspective. Our paper did not separate patients, family members and health professionals perspectives of dying with dignity, since the majority of themes were identified in all three groups. While health professionals' understanding of dignity should not be substituted for the opinions of patients, their understanding can affect the delivery of service to patients and families. Furthermore, it appears that health professionals view dignity according to how their patients and families understand it; and based upon their professional experience in hospice.[4]

    As Trussardi and Gott indicate, the process of dying happens with or without professional support. Family members are often the primary caregivers for patients dying at home. The care they offer to support patient dignity deserves study, but was not within the scope of our review paper. We examined dying with dignity in the context of hospice and palliative care, where health professionals are the primary caregivers. With diminishing independence, the dignity of dying patients is increasingly affected by care. Hence, qualified professional services are essential within hospice and palliative care.

    Trussardi and Gott try to deemphasize the importance of autonomy as a key characteristic of dignity by citing the notion of "interdependence". However, autonomy and interdependence are not mutually exclusive. Autonomy refers to the extent to which patients have a sense of control over their life circumstances.[5] Interdependence occurs when two or more autonomous individuals rely on and are responsible for each other; it implies a reciprocal relationship rather than a solely dependent relationship. For example, dying patients and their families are emotionally interdependent, but patients may still have a strong sense of autonomy so long as they are able to make their own decisions. The dynamic of interdependency between dying patients and their families might be better understood as a meaningful relationship, which while interdependent, can strive towards maintaining patient autonomy and dignity.

    Acknowledgments

    The author would want to thank Dr. Harvey Max Chochinov for his valuable feedback and comments on an earlier draft of this paper.

    References

    1. Trussardi G, Gott M. Clarification of the common aspects of dignity in end-of-life care. Evid Based Nurs Published Online First: 4 February 2015. doi: 10.1136/eb-2014-102007

    2. Guo Q, Jacelon CS. An integrative review of dignity in end of life care. Palliat Med 2014;28:913-40.

    3. Pleschberger S. Dignity and the challenge of dying in nursing homes: the residents' view. Age Ageing 2007;36:197-202.

    4. Guo Q. A preliminary model of dignity management in hospice. PhD Thesis, University of Massachusetts Amherst, Amherst, MA, 2014.

    5. Chochinov HM, Hack T, McClement S, et al. Dignity in the terminally ill: a developing empirical model. Soc Sci Med 2002;54:433-43.

    Conflict of Interest:

    None declared

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  9. Response to: Legalising Assisted Dying

    I would like to thank Harriet Copperman for her response to my recent editorial. I would like to respond to some of the points she has raised. Harriet says that: We should have the option of an assisted death. For many, just having that option would be sufficient to cope with their death. But a small percentage of people would want to be able to end to their life when it became intolerable. Suicide is not illegal any more. We should therefore, with all the safeguards proposed in the Faulkner bill, enable those people to bring an end to their distress and suffering.

    However, the safeguards don't work. Supporters of Lord Falconer's Bill also argue that, if there are effective safeguards, we can give the right to die for those who wish to hasten their death while protecting those who do not. This argument was used in relation to the 1967 Abortion Act. Whatever one thinks about abortion, David Steel (who as an MP championed abortion reform in the 1960s) has pointed out that the 1967 Abortion Act was intended to stop back street abortions. There were warnings at the time about a slippery slope. And so it has proved to be: despite various safeguards, we now effectively have abortion on demand.

    We also need to listen to the warnings of people living and working in countries where euthanasia or assisted suicide has been legal for some time. The words of Theo Boer, a Dutch ethicist who supported the legalisation of voluntary euthanasia in the Netherlands are particularly pertinent. He cautions against legalising AS in the UK (http://bit.ly/1loFYgH). Professor Boer believes that the very existence of a law would progressively turn assisted suicide from a last resort to the norm. Data from both Oregon and Belgium lend support to such a view (Finlay and George 2011; Steck et al. 2013).

    Harriet Copperman also states "it is obvious now that with diminishing financial and professional resources and increased bureaucracy, that the goal of 'perfection' will never be achieved, and in my opinion specialist palliative care will become increasingly side- lined." This will become more likely if we legalise assisted suicide as is evident from cases in Oregon in the USA, were two cancer patients were refused funding for chemotherapy but were told that the State would pay for their AS.

    The bottom line remains that in matters of life and death, you cannot create freedom (to die) for the few without taking away adequate safeguards for the many.

    References

    Finlay, I.G. and George, R. Legal physician-assisted suicide in Oregon and the Netherlands; Evidence concerning the impact on patients in vulnerable groups - another perspective on Oregon's data, Journal of Medical Ethics, 2011;37:171-174.

    Steck, N., Egger, M., Maessen, M., Reisch, T. and Zwahlen, M. Euthansia and assisted suicide in selected European Countries and US States: Systematic literature review, Medical Care, 2013;51(10):938-944.

    Conflict of Interest:

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  10. Legalising Assisted Dying

    Dear Editor,

    I began practising palliative care in the community in the mid 1970's and retired nearly 25 years later, having been involved with the care of thousands of dying patients. We were evangelical in our attempts to teach and spread the 'gospel of palliative care' to professionals, students and lay people, in the UK and around the world. We thought it was the answer to enabling people to have a good death.

    It was a large part of the answer, but not all of it. Alison Twycross points out that the need is to provide good end of care life so that people do not want/need an assisted death. I would have agreed with her in the past, but it is obvious now that with diminishing financial and professional resources and increased bureaucracy, that the goal of 'perfection' will never be achieved, and in my opinion specialist palliative care will become increasingly side-lined.

    Alison Twycross feels that good end of life care would be more likely were there, for example, better education about whether or not to administer antibiotics to someone who is terminally ill. That is actually an excellent example of how we have failed, after 50 years or so of trying to educate everyone appropriately, as Dame Cicely Saunders first taught about that topic in the 1960's. Incidentally, she always used to say "the patients are our teachers", and my addition to that was "while we learn they suffer"!

    The provision of palliative care (and pain control is probably easier to deal with than some other symptoms a patient may have) will never be perfect however much we would like it to be.

    We should have the option of an assisted death. For many, just having that option would be sufficient to cope with their death. But a small percentage of people would want to be able to end to their life when it became intolerable. Suicide is not illegal any more. We should therefore, with all the safeguards proposed in the Faulkner bill, enable those people to bring an end to their distress and suffering.

    Perhaps if we could really feel another's suffering, rather than just empathise, we might have changed the law years ago.

    Conflict of Interest:

    None declared

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