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RESEARCH:
Judith Rietjens, Johannes van Delden, Bregje Onwuteaka-Philipsen, Hilde Buiting, Paul van der Maas, and Agnes van der Heide
Continuous deep sedation for patients nearing death in the Netherlands: descriptive study
BMJ 2008; 0: bmj.39504.531505.25v1 [Abstract] [Full text]
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Rapid Responses published:

[Read Rapid Response] Painless death
George Y Caldwell, Singapore 259858   (21 March 2008)
[Read Rapid Response] The dying patient. Stratifying sedation
Hector D. Diaz, Mercedes I. Veliz   (28 March 2008)
[Read Rapid Response] Caution
John H Scotson   (13 April 2008)
[Read Rapid Response] Professionals should not feel they are shortening life with sedation
Andrew Thorns   (14 April 2008)
[Read Rapid Response] There is a spectrum of sedation
John C Chambers   (15 April 2008)
[Read Rapid Response] Continuous deep sedation: Palliative care input essential
Joanne Droney, Julia Riley   (15 April 2008)
[Read Rapid Response] Access to specialist palliative care is uneven in Europe
Claud Regnard   (16 April 2008)
[Read Rapid Response] Dutch Euthanasia
Stephen R Brennan   (17 April 2008)
[Read Rapid Response] The dehumanization of dying?
Teresa M. Lynch   (23 April 2008)
[Read Rapid Response] Active Euthanasia Disguised
Shimon M Glick, Alan Jotkowitz   (2 May 2008)

Painless death 21 March 2008
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George Y Caldwell,
General practitioner
31 Balmoral Park, #18-33,,
Singapore 259858

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Re: Painless death

The Afghanistan economy depends upon Opium.

This should be encouraged to provide a local industry refining Heroin and Morphine.

The raw Opium should be bought up now by that country's government at just above the going market price and its further export be controlled.

This by-ptoduct to be made available at minimal cost to all hospitals across the world so that patients with any terminal illness can die in dignity and comfort.

And patients with any constant pain should have it relieved by an injection of Morphine. The nurses' casual Panadol does not help much.

There should not be any pain in death.

Competing interests: None declared

The dying patient. Stratifying sedation 28 March 2008
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Hector D. Diaz,
ICU Professor
University Hospital of Sagua la Grande. Villa Clara. zipcode 52310.Cuba,
Mercedes I. Veliz

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Re: The dying patient. Stratifying sedation

Terminally ill patients could cause significant distress to their relatives. Deeply sedation may reduce the discomfort of those patients at the end of their life, by the other hand that treatment may be inopportune because some patients and their families need work together in order to solve some problem not yet unravel.

Dying patients in our Hospital are individualized and the main symptoms are treated based on their requirements. When is demanded any kind of sedation, the sedation-agitation scale (SAS)(1)is implemented. The 3 or 4 level of that scale are preferable in order to keep the patients as cooperative as possible with no severe symptoms. Other patients definitely require more deeply sedation, and therefore the levels 6 or 7 of SAS are needed.

Benzodiazepines, propofol and haloperidol are the most used drugs for sedation in palliative care(2). Those drugs are useful and safe but adverse reactions have been expressed. The use of opiates sometimes overwhelmed the relative because of their absurd believes about that drugs and sometimes they deny the prescription of opiates.

The principle of autonomy or informed consent of the next of kin is always well thought-out when the attending team considers a treatment.

Dying patients also experiment exhausting symptoms like pain, dyspnea, general fatigue among others and sedation are considered an effective treatment, but the deeply of sedation must be keep in mind in order to do not harm the patients and provide them a decorous death.

References: 1. Riker RR, Fraser GL, Cox PM. Continuous infusion of haloperidol controls agitation in critically ill patients. Crit Care Med, 1994; 22:433 -40 2. Kress J, Pohlman A, O'Connor M and Hall J. Daily interruption of sedative infusions in critically ill ´patients undergoing mechanical ventilation. N Engl J Med 2000;342:1471-7.

Competing interests: None declared

Caution 13 April 2008
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John H Scotson,
Retired General Practitioner
home WA14 2AN

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Re: Caution

The last days or hours of a patient life can be invaluable for settling their spiritual and temporal affairs. The last wishes of the dying patients may be expressed to family and friends during this time, therefore one must be cautious in respect of the premature administration of excessive sedation One must also bear in mind that prognosis involving the dying can be erroneous and therefore one must be hesitant about administering sedation, which will hasten death. The words in the article "..hydration should be offered to sedated patients only when the benefit will outweigh the harm.." Hydration is essential for the maintenance of life: it is therefor difficult to understand how the withdrawal of hydration, unless death is imminent, would be of benefit

Competing interests: None declared

Professionals should not feel they are shortening life with sedation 14 April 2008
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Andrew Thorns,
Consultant and Honorary Senior Lecturer in Palliative Medicine
Pilgrims Hospice, Margate, Kent. CT9 4AD.

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Re: Professionals should not feel they are shortening life with sedation

The physician at the end of life is faced with many dilemmas. Stripped of the usual battery of blood tests and hope of cure, he or she is left with the suffering of the individual and the distress that engenders in those close to that person (whether professional or lay).

The need for a comfortable death has long been agreed. The place of assisting this by ending life is regularly suggested, yet the means of relieving distress without shortening life continue to grow alongside a better understanding of the needs of all those involved and how we as professionals can help to meet these needs.

Sedation towards the end of life can be an extremely effective tool. A dose of midazolam can provide invaluable relief from distressing, resistant symptoms without resulting in continuous deep sedation or premature death. With explanation and consent the dose may need to be increased to meet ongoing needs; this may then meet the criteria described by Rietjens et al (1), whichever definition is used (2).

When and how this is done is a clinical skill based on an understanding of the needs of that individual and the options available. Physicians who regularly care for the dying in the community or in hospital should have this skill. In specialist palliative care practice this rarely, if ever, results in significant shortening of life (3) so it certainly should not do so in non-specialist settings.

Physicians should not feel they are shortening life by the use of sedation or other means in an attempt to control distress. If so, those with the clinical skills more attuned to these situations should be involved to ensure the best care for the patient and those close to them.

1. Rietjens J, van Delden J, Onwuteaka-Philipsen B, Buiting H, van der Maas P, van der Heide A. Continuous deep sedation for patients nearing death in the Netherlands: descriptive study. BMJ 2008;336:810-3.

2. Murray SA, Boyd K, Byock I. Continuous deep sedation in patients nearing death. BMJ 2008;336:781-2.

3. Sykes NP, Thorns A. The use of opioids and sedatives at the end of life in palliative care. Lancet Oncol 2003;4:312-8

Competing interests: None declared

There is a spectrum of sedation 15 April 2008
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John C Chambers,
Macmillan Consultant and Medical Director
Katharine House Hospice, East End, Adderbury, Oxon, OX17 3NL

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Re: There is a spectrum of sedation

“I write this to you while experiencing a blessedly happy day, and at the same time the last day of my life. Urinary blockages and dysenteric discomforts afflict me, which could not be surpassed for their intensity. But against all these things are ranged the joy in my soul produced by the recollection of the discussions we have had.” So wrote the agnostic philosopher Epicurus over two millennia ago. (1) It is an extreme example of a daily observation in hospices: whilst sometimes seen together, physical symptoms and terminal distress are different. Some hospice patients suffer residual symptoms but their calm endurance can be remarkable. In contrast, occasional patients suffer extreme terminal distress in the absence of overt physical symptoms.

Terminal distress is a symptom in its own right. Only if it cannot be eradicated by treating its root causes should it be palliated pharmacologically through anxiolysis. If the starting dose proves ineffective, it is typical to carefully titrate upwards until the patient is sedated but ideally still conscious. An audit of 50 consecutive deaths at our hospice revealed continuous midazolam use in 32 cases, at individualised doses ranging from 5-100mg/day and a mean of 30mg/day. However, if “deep continuous sedation” is sustained pharmacologically- induced unconsciousness in response to malignant distress, then perhaps 0.5% require it at our hospice. In the absence of a clear definition, an 8.2% rate in the community could quite literally mean anything (2).

1. Inwood B, Gerson LP eds. The Epicurus Reader, Selected Writings and Testimonia. Indianapolis: Hackett Publishing Company, Inc., 1994.

2. Rietjens J, van Delden J, Onwuteaka-Philipsen B et al. Continuous deep sedation for patients nearing death in the Netherlands: descriptive study. BMJ 2008; 336: 810-813.

Competing interests: None declared

Continuous deep sedation: Palliative care input essential 15 April 2008
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Joanne Droney,
Specailist Registrar Palliative Medicine
Royal Marsden Hospital W6 8LU,
Julia Riley

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Re: Continuous deep sedation: Palliative care input essential

Dear Sir,

It was with some concern that we read the article by Rietjens J et al “Continuous deep sedation for patients nearing death in the Netherlands: descriptive study".

It is widely acknowledged that continuous deep sedation should only be used for the relief of intractable suffering and symptoms which may not be reversed by standard palliative treatment.(1) In this study 74% of the patients who were sedated were reported to have experienced pain, dyspnoea, confusion or anxiety. However only 9% of the physician respondents in this study consulted palliative care experts in the month before the death of the patient. Palliative care physicians specialise in “the relief of pain and other distressing symptoms” (2) and have expertise and experience of the use of different pharmacological, psychological and supportive measures to manage such symptoms. One wonders whether a substantial percentage of these patients would have had adequate symptom control without the need for continuous deep sedation if palliative care expertise had been more widely sought / available.

In this study palliative care consultation was strongly associated with the use of benzodiazepines rather than morphine alone. In UK opioids are generally not used for sedation. Inter-individual variation in response to opioids has been well documented. (3) The use of opioids to sedate may be associated with heightened suffering in terms of opioid- induced myoclonus, hallucinations, confusion and hyperalgesia.

Continuous deep sedation at the end of life, when carried out in a controlled fashion, with careful dose titration according to patient symptoms, has not been associated with shortened overall survival (4;5).It is useful for a tiny minority of patients for whom all other treatments options have failed or for whom these are no longer appropriate. All other treatment options should be considered before the serious decision to use continuous deep sedation in patients nearing death is made. Such a decision can only and should only be made in association with a palliative care team.

Reference List

(1) Morita T, Tsuneto S, Shima Y. Proposed definitions for terminal sedation. Lancet 2001 Jul 28;358(9278):335-6.

(2) World Health Organisation. World Health Organisation Definiton of Palliative Care. [retrieved 2008 Apr 14];

(3) Riley J, Ross JR, Rutter D, Wells AU, Goller K, Du BR, et al. No pain relief from morphine? Individual variation in sensitivity to morphine and the need to switch to an alternative opioid in cancer patients. Support Care Cancer 2006 Jan;14(1):56-64.

(4) Sykes N, Thorns A. Sedative use in the last week of life and the implications for end-of-life decision making. Arch Intern Med 2003 Feb 10;163(3):341-4.

(5) Vitetta L, Kenner D, Sali A. Sedation and analgesia-prescribing patterns in terminally ill patients at the end of life. Am J Hosp Palliat Care 2005 Nov;22(6):465-73.

Competing interests: None declared

Access to specialist palliative care is uneven in Europe 16 April 2008
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Claud Regnard,
Consultant Physician in Palliative Care Medicine
St. Oswald's Hospice and Newcastle Hospitals NHS Trust, Regent Avenue, Newcastle upon Tyne, NE3 1EE

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Re: Access to specialist palliative care is uneven in Europe

Dear Sir,

The survey by Rietjens et al (1) is challenging for many of the reasons pointed out by Murray et al in the accompanying editorial,(2) but also reveals the limitations of palliative care in the Netherlands.

Nearly three quarters of the patients had pain, dyspnoea, confusion or anxiety. These symptoms were presumably sufficiently severe and persistent to require continuous sedation. In the UK all such patients would be expected to be referred to a palliative care specialist for advice on managing the symptoms. In this survey only 9% of the Dutch patients were referred.

In a recent survey of 52 European countries,(3) seven countries (including the UK) already have official certification in palliative medicine and recognize palliative medicine as a speciality, and a further ten countries are in the process of certification. The countries who do not recognise palliative medicine as a specialty and are not currently undergoing any process of certification include Switzerland, Belgium and the Netherlands.

Studies at the end of life need to be interpreted with knowledge of the availability and use of specialist palliative care, and not on assumptions that this is available to all.

References:

1. Rietjens J, va Delden J, Onwuteaka-Philipson B, Buiting H, van der Maas P, van der Heide A. Continuous deep sedation for patients nearing death in the Netherlands: descriptive study. BMJ: 2008; 336: 810-13.

2. Murray SA, Boyd K, Byock I. Continuous deep sedation for patients nearing death: imprecise taxonomy makes interpreting trends. BMJ: 2008; 336: 781-2.

3. Centeno C, Noguera A, Lynch T, Clark C. Official certification of doctors working in palliative medicine in Europe: data from an EAPC study in 52 European countries. Palliative Medicine; 2007 21: 683-7.

Competing interests: None declared

Dutch Euthanasia 17 April 2008
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Stephen R Brennan,
Retired Consultant Physician
Hope Valley. S33 0BR

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Re: Dutch Euthanasia

Dear Sir, not a supporter of euthanasia, I was interested to see in this article that as the rate of "deep sedation" in Holland went up, the rate of euthanasia went down. I am tempted to see this change as just converting one method of euthanasia to another. But, hopefully, it will include cases where terminal symptoms have been better controlled as in the truly Hospice-type situation, even if length of life is somewhat reduced. As long as we focus on the relief of individual symptoms, we can assure our patients that we are doing the best we can to help them live out their lives as completely as possible, and not trying to kill them off as quickly as possible to save the distress of others, and reduce the burden on health services. Yrs faithfully. Dr Stephen Robert Brennan. Retired Consultant Physician. MBBS.MRCS.FRCP.

Competing interests: None declared

The dehumanization of dying? 23 April 2008
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Teresa M. Lynch,
PhD student , nursing ethics and patient advocacy
Brunel University UB8 3PH

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Re: The dehumanization of dying?

Members of the professions are expected to have undergone extensive intellectual and practical preparation and publicly to commit themselves to the welfare of those in their care [1].

What is needed is a discussion about redoubling practical and research efforts to help patients with their symptoms, at all times, in all circumstances. This would be more effective than beginning a debate on the momentous decision for terminal sedation for intractable symptoms. The possible future practice of deep sedation without hydration, justified as lacking perceived benefit, is regrettable. A period of sedation could last for considerable time until death.

Though the word ‘intractable’ when describing symptoms, has its place, I believe that professionals need to look at the patient in a holistic manner – a term so often used in medical and nursing discourse. All professionals who care for patients, whether or not they are at the end of their lives, need to remember the basic duty to ‘reverse the reversible’ wherever possible and that the physical state is affected by the psychological, social and spiritual levels of distress.

Patients are more than their symptoms. The intuition of patients should never be underestimated. Any patient who has a sense that their carers have the option of abolishing all their symptoms, together with their life, will have degrees of anxiety that require professional help. The true cause of 'unbearable suffering', another term commonly used today, should be addressed. This may well be the result of patients’ acute awareness that there is a lack of concerted effort to deal with their needs, including basic needs, i.e. hydration. In turn, possible resultant agitation and pain may be dangerously labelled as ‘intractable’.

The 2007 report on causes of patient requests for death in Oregon [2]revealed that intractable symptoms do not top the list, rather, patients anticipate loss of dignity as one of the most common reasons for seeking out physician-hastened death. Perhaps underlying this is a looming sense of impending abandonment by the professional carers.

‘Unfinished business’ is a truly relevant concept in relation to this proposed debate and must be considered as an important part of the patient's holistic needs. Helping patients die represents a shift away from the sentimental values of medicine to heal and promote human wholeness and moves to a position where the doctor is causing the death [3]. Withdrawal of contact, affection, and care is probably the greatest single cause of the dehumanization of dying.

[1] Pellegrino ED. Professionalism, profession and the virtues of the good physician. Mt Sinai J Med 2002; 69: 378-84.

[2]Oregon Dept of Health Services News Release (2007). Annual Death with Dignity Act Report, March 8, General Contact: Bonnie Widerburg, 971-673- 1282, Program contact: Mel Kohn, M.D., 971-673-0982.

[3]Stevens, KR. Emotional and Psychological Effects of Physician-Assisted Suicide and Euthanasia on Participating Physicians. Issues in Law and Medicine, 2006; vol 21, no.

Competing interests: None declared

Active Euthanasia Disguised 2 May 2008
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Shimon M Glick,
professor emeritus
Ben Gurion University, Beer Sheva , Israel,
Alan Jotkowitz

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Re: Active Euthanasia Disguised

The editorial,"Continuous deep sedation in patients nearing death"(1), in response to the report by Rietjens (2),is welcome, if somewhat belated.

In response to the earlier reprt by Rietjens (3)one of us (4) pointed out that the practice of terminal sedation, which was defined by the authors to include withdrawal of fluids and nutrition, essentially was a form of euthanasia. Sedation itself is generally sufficient to eliminate suffering; thus withdrawal of fluid and nutrition has only one purpose-the hastening of death. Jansen and Sulmasy (5)have appropriately distinguished between "sedation of the imminently dying", a legitimate palliative act, and what they called "sedation towards death", a disguised form of active euthanasia. The significant increase in the number of cases of terminal sedation accompanied by a smaller decrease in the number of cases officially classified as euthanasia deaths seems to indicate that close to 12,000 patients' lives were deliberately shortened by Dutch physicians in 2005. The fact that most of the patients discussed by Rietjens in the present article (2) died within a week of the initiation of the process does not mean, as implied, that the process was used only in moribund patients, but perhaps indicates what should be obvious-that human survival without fluids is short indeed. The overwhelming majority of the events were not accompanied by palliative consultation, by patient initiated requests, or by reports to the authorities. To those who still have doubts about "slippery slopes", the present practices, as well as the recent Groningen protocol(6), allowing euthanasia in severely handicapped newborns, should be compared to the initial strict ground rules proposed as a precondition for the institution of active euthanasia in the Netherlands.

1.Murray SA Boyd K Byock I. Continuous deep sedation in patients nearing death. BMJ 2008;336:781-82

2.Rietjens J et al. Continuous deep sedation for patients nearing death in the Netherlands:descriptive study. BMJ 2008;336:810-13

3.Rietjens JA et al.Physician reports of terminal sedation without hydration or nutrition for patients nearing death in the Netherlands. Ann Intern Med 2004;141:178-85

4.Glick SM Terminal sedation in the Netherlands. Ann Intern Med 20004;141:966

5.Jansen LA Sulmasy DP Sedation alimentation hydration and equivocation :careful conversation about care at the end of life. Ann Intern Med 2002;136: 845-49

6.Verhagen E Sauer P. The Groningen protocol: euthanasia in severly ill infants. N Engl J Med 2005;352:959-62

Shimon M Glick, MD
Alan Jotkowitz, MD

Lord Rabbi Jakobovits Center for Jewish Medical Ethics, Faculty of Health Sciences, Ben Gurion University of the Negev, Beer Sheva, Israel

Competing interests: None declared