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.
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.
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:
Click here
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:
Click here
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:
Click here
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. H...
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.
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...
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.
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....
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.
Koelewijn-van Loon commented on our study, a pragmatic randomised
trial of the clinical effectiveness of nurses as substitutes for GPs in
cardiovascular risk management. In our study, we found a greater decrease
in the mean value of risk factors in the practice nurse group than in the
GP group, but after confounders and baseline risk factors were controlled
for, a statistically significant decrease was found only for tot...
Koelewijn-van Loon commented on our study, a pragmatic randomised
trial of the clinical effectiveness of nurses as substitutes for GPs in
cardiovascular risk management. In our study, we found a greater decrease
in the mean value of risk factors in the practice nurse group than in the
GP group, but after confounders and baseline risk factors were controlled
for, a statistically significant decrease was found only for total
cholesterol [1].
The majority of patients included concerned secondary prevention.
Indeed, "these patients were probably already aware of the need for a good
lifestyle". Still, we found that many patients did not meet the treatment
targets and were not adherent to a healthy lifestyle. Non-adherence to
treatment is a major factor in the lack of success of cardiovascular
prevention hence caregivers should communicate with patients about their
drug use and adherence to life style interventions. In this regard,
improvement of cardiovascular prevention is still needed. The outcomes
achieved by practice nurses were better than those of general
practitioners, still nurses only inquired about drug use in only 40% of
patients [2].
Koelewijn-van Loon did question if the effect is caused by nurses
acting as substitutes for GPs or by the fact that "nurses were
specifically trained", "nurses performed well because this new task
recognized their position" or/and "nurses were familiar with lifestyle
counselling in contrast to GPs". Indeed, these factors could give an
explanation for the results achieved by practice nurses, still
cardiovascular risk management was a new task for practice nurses in our
study. In addition, they were not specifically trained. Therefore, it is
expected that in the future practice nurses will achieve even better
health outcomes, as their education improves and more experience is
gained. The possibility must be taken into account that practice nurses in
our study were more successful compared to other practice nurses because
of the awareness that their performance was being assessed. However, this
also could be stated for participating general practitioners. Our
qualitative study among nurses also showed that nurses in our study were
uncertain about the content of lifestyle advice [3]. Still, we found that
practice nurses play an important role in the successive removal of
barriers to the implementation of cardiovascular prevention within the
health care centre and therefore will improve cardiovascular prevention in
primary care. It could be concluded that substitution of cardiovascular
risk management from GPs to practice nurses concerns more the performance
of complementary tasks instead of substitution of tasks.
Another comment concerned the study population being unbalanced. From
an univariate analysis of variance - with control for healthcare centre -
no baseline differences were found, except for body mass index
(SBP:1.9(-1.4-5.3)p=0.258, DBP:0.003(-1.70-0.17)p=0.997, TChol:-0.07(-0.03
-0.12)p=0.460, LDL:-0.03(-0.22-0.16)p=0.783, HDL:0.06(-.001-0.123)p=0.055,
BMI-1.05(-1.76--0.34)p=0.004).
Body mass index was underestimated in the general practitioner group
because of the lack of correction for self-reported body length.
Our conclusion that practice nurses achieve the same or even better
results in cardiovascular risk management compared with GPs is therefore
justified. However, more education for nurses is needed; this training
should include knowledge of cardiovascular diseases (symptoms) to allow
early recognition of recurrences or new expressions of cardiovascular
disease, cardiovascular pharmacology and content of lifestyle intervention
related to cardiovascular diseases. Moreover, it is important to enhance
practical skills in lifestyle interventions.
REFERENCES
1. Voogdt-Pruis HR, Beusmans GH, Gorgels AP, Kester AD, Van Ree JW.
Effectiveness of nurse-delivered cardiovascular risk management in primary
care: a randomised trial. Br J Gen Pract.2010 Jan;60(570):40-6.
2. Voogdt-Pruis HR, Van Ree JW, Gorgels AP, Beusmans GH. Adherence to
a guideline on cardiovascular prevention: A comparison between general
practitioners and practice nurses. Int J Nurs Stud. 2010 Dec 20.
doi:10.1016/j.ijnurstu.2010.11.008.
3.Voogdt-Pruis HR, Beusmans GHMI, Gorgels APM, Van Ree JW.
Experiences of doctors and nurses implementing nurse-delivered
cardiovascular prevention in primary care: a qualitative study. Journal
of Advanced Nursing. 2011; doi: 10.1111/j.1365-2648.2011.05627.
Readers of this EBN Notebook might like the EBN Research Made Simple paper looking at What is qualitative synthesis? This is available at: Click here
Conflict of Interest:
None declared
Readers of this EBN Notebook might like the EBN Research Made Simple paper entitled: Selecting the sample. This is available at: Click here
Conflict of Interest:
None declared
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:
Cli...
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: Click here
Conflict of Interest:
None declared
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: Click here
Conflict of Interest:
None declared
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: Click here
Conflict of Interest:
None declared
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. H...
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...
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....
Koelewijn-van Loon commented on our study, a pragmatic randomised trial of the clinical effectiveness of nurses as substitutes for GPs in cardiovascular risk management. In our study, we found a greater decrease in the mean value of risk factors in the practice nurse group than in the GP group, but after confounders and baseline risk factors were controlled for, a statistically significant decrease was found only for tot...
Pages