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Physician Reports of Terminal Sedation without Hydration or Nutrition for Patients Nearing Death in the Netherlands

Judith A.C. Rietjens, MSc; Agnes van der Heide, MD, PhD; Astrid M. Vrakking, MSc; Bregje D. Onwuteaka-Philipsen, PhD; Paul J. van der Maas, MD, PhD; and Gerrit van der Wal, MD, PhD
[+] Article and Author Information

From Erasmus MC, Rotterdam, and Vrije Universiteit Medical Center, Amsterdam, the Netherlands.


Acknowledgments: The authors thank the members of the Steering Committee for their continuous support throughout the study; the physicians who provided the study data; the interviewers; Caspar W.N. Looman for his statistical support and advice; Karen L. Gribling for translation advice; and the chairman of the Royal Dutch Medical Association and the Chief Inspector for Health Care for their support for the study.

Grant Support: By a grant from the Ministry of Health and the Ministry of Justice.

Potential Financial Conflicts of Interest: None disclosed.

Requests for Single Reprints: Judith Rietjens, MSc, Department of Public Health, Erasmus MC, PO Box 1738, 3000 DR Rotterdam, the Netherlands; e-mail, j.rietjens@erasmusmc.nl.

Current Author Addresses: Drs. Rietjens, van der Heide, Vrakking, and van der Maas: Department of Public Health, Erasmus MC, PO Box 1738, 3000 DR Rotterdam, the Netherlands.

Drs. Onwuteaka-Philipsen and van der Wal: Department of Social Medicine, Vrije Universiteit Medical Center, van der Boechorststraat 7, 1081 BT Amsterdam, the Netherlands.

Author Contributions: Conception and design: J.A.C. Rietjens, A. van der Heide, A.M. Vrakking, B.D. Onwuteaka-Philipsen, P.J. van der Maas, G. van der Wal.

Analysis and interpretation of the data: J.A.C. Rietjens, A. van der Heide, A.M. Vrakking, B.D. Onwuteaka-Philipsen, P.J. van der Maas, G. van der Wal.

Drafting of the article: J.A.C. Rietjens, A. van der Heide.

Critical revision of the article for important intellectual content: J.A.C. Rietjens, A. van der Heide, A.M. Vrakking, B.D. Onwuteaka-Philipsen, P.J. van der Maas, G. van der Wal.

Final approval of the article: J.A.C. Rietjens, A. van der Heide, A.M. Vrakking, B.D. Onwuteaka-Philipsen, P.J. van der Maas, G. van der Wal.

Statistical expertise: J.A.C. Rietjens, A. van der Heide.

Obtaining of funding: A. van der Heide, B.D. Onwuteaka-Philipsen, P.J. van der Maas, G. van der Wal.

Administrative, technical, or logistic support: J.A.C. Rietjens.

Collection and assembly of data: J.A.C. Rietjens.


Ann Intern Med. 2004;141(3):178-185. doi:10.7326/0003-4819-141-3-200408030-00006
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Most of the 410 physicians interviewed (76%) were men; 51% were clinical specialists, 30% were general practitioners, and 19% were nursing home physicians (Tables 1 and 2). Of all physicians, a weighted percentage of 52% (95% CI, 48% to 57%) had ever practiced terminal sedation. This percentage was 55% (CI, 49% to 62%) for clinical specialists, 48% (CI, 39% to 57%) for general practitioners, and 75% (CI, 64% to 83%) for nursing home physicians. We asked all interviewed physicians to estimate the total number of times they performed terminal sedation in 2000 and 2001. These numbers were extrapolated to the total number of 140 377 deaths in 2001 by multiplying them with the weighting factor for each specialty and assuming that the numbers were similar for the 5% of deaths covered by hospital doctors from specialties other than the ones included in our study. This extrapolation suggests that physicians used terminal sedation in 10.0% (CI, 9.1% to 10.8%) of all deaths in that year. Of the 10.0% of deaths preceded by terminal sedation, 5.5% (CI, 5.0% to 6.1%) were attended by clinical specialists, 2.5% (CI, 1.9% to 3.2%) by general practitioners, and 2.0% (CI, 1.7% to 2.2%) by nursing home physicians.

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Two faces of Terminal Sedation in The Netherlands
Posted on August 12, 2004
Zbigniew Zylicz
Palliative Care Consultant, Comprehensive Cancer Centre, Nijmegen, The Netherlands
Conflict of Interest: None Declared

The excellent paper by Rietjens et al. (3 August 2004, pp 178-185) about terminal sedation in the Netherlands can only be criticised for the definition of terminal sedation which does not differentiate clearly between deep sedation in imminently dying and sedation as a surrogate for euthanasia. In countries like the Netherlands, there is a real risk that the cumbersome legal procedure of euthanasia will be replaced by much easier (in relation to paperwork and legal responsibility) "˜terminal sedation'. Muriel Gillick in her editorial comment (pp 236-7)asks for patients vignettes to illustrate the practice of terminal sedation in the Netherlands. One would anticipate that terminal sedation, intended as a surrogate for euthanasia, will take place more often in hospital by a medical specialist. Consultations by palliative care professionals are rare in these institutions. Not infrequently the procedure will be performed using many grams of IV morphine/24 hours, sometimes with adjunctive sedatives. Not infrequently patients and their relatives are not informed about the intent of the sedation. Traditionally GPs were responsible for more than 75% of the reported cases of euthanasia. (1) Much effort has been directed to this group, and palliative care consultations are now widely available. In contrast to the first vignette, terminal sedation in general practice or in a nursing home is typically performed after consultation with the family, and if possible with the patient, using continuous SC midazolam or other sedative, with adjunctive morphine if the patient is in pain. The dose of sedating drugs is titrated upwards until the patient is peaceful. Because of the situation described first, some people are advocating the regulation of terminal sedation in exactly the same way as euthanasia. However, regulation would result in a major barrier in the compassionate use of sedatives in the dying. Having developed palliative care support for general practitioners, the Dutch government should now facilitate the provision of proper palliative care in hospitals, as is obligatory in some countries. For this, palliative medicine in the Netherlands should be recognised as a distinct specialty, as in the UK. Unfortunately, such a move is vigorously opposed by the most Dutch medical specialists.

References

(1)Onwuteaka-Philipsen BD, van der Heide A, Koper D, Keij-Deerenberg I, Rietjens JA, Rurup ML et al. Euthanasia and other end-of-life decisions in the Netherlands in 1990, 1995, and 2001. Lancet. 2003;362:395-9.

Conflict of Interest:

None declared

The Slope is Really Slippery
Posted on August 26, 2004
shimon m glick
ben gurion university
Conflict of Interest: None Declared

The recent article by Rietjens et al on terminal sedation adds to the disturbing data from the Netherlands. In addition to several thousand cases of active euthanasia reported annually, we are now told about another approximately 14,ooo preceded by terminal sedation, which, as defined by the authors, invariably includes withdrawal of fluids and nutrition. Since suffering is virtually eliminated by the sedation itself, the purpose of fluid and nutrition withdrawal can only be to hasten death. Thus at the very least (because of probable significant underreporting) close to 20,000 Dutch patients have their death actively and deliberately hastened by their physicians. By the physicians' own admission in many of these cases these actions were not initiated as a result of patient request, and often not even by family request, many are not reported as required, consultations with colleagues are not carried out, and professional palliative care is offered infrequently as an alternative.

In my experience as a clinician for close to a half a century, the percentage of patients suffering so severely so as to merit even consideration of euthanasia is nowheres close to the almost 15% of all Dutch deaths. It is abundantly clear that the introduction of euthanasia in the Netherlands has led to a very light "trigger finger" in a very short time span. These developments are a far cry from the way the original proposals were presented, replete with safeguards and precautions against abuse. If ever there was an example of the slippery slope, it is clearly evident here.

At a symposium several years ago a Dutch physician was asked how he feels when he kills a patient, to which he replied that the first time it was difficult.

I believe that the Dutch experience should provide a dramatic warning to physicians the world over not to abandon the long standing honorable medical tradition of not deliberately terminating human life.

Conflict of Interest:

None declared

IN RESPONSE-
Posted on October 1, 2004
Judith A.C. Rietjens
Department of Public Health, University Medical Center Rotterdam
Conflict of Interest: None Declared

In his letter, Dr. Glick expresses his concerns about the Dutch practice of terminal sedation, arguing that all cases of terminal sedation should actually be considered as the active ending of life, similar to euthanasia. He states that the purpose of fluid and nutrition withdrawal can only be to hasten death, since the suffering of the patient is virtually eliminated by the sedation itself.

Alleviation of severe symptoms by bringing a patient in deep sedation is a rather frequently applied medical procedure for terminal patients, in the Netherlands as well as in other countries (1). We have shown that deep sedation is typically used for patients who are close to death and who suffer from severe symptoms. Most of these patients wouldn't receive artificial nutrition or hydration regardless of whether or not they are sedated, because they are in the dying phase. Forgoing of artificial nutrition or hydration is usually not based upon an explicit decision in these cases, and certainly not upon a decision that resembles euthanasia. Furthermore, forgoing artificial nutrition or hydration in dying patients is, at least in the Dutch context, regarded as being morally different from actively providing lethal drugs, as in euthanasia. Therefore, in general, terminal sedation cannot be seen as being equivalent to -or counted as- euthanasia.

Of course, similar to other medical procedures at the end of life, terminal sedation should meet criteria for prudent practice. These are e.g. that medical treatments should be provided at the right indication, after discussion with and informed consent of the patient or, in case of incompetence of the patient, the patient's relatives. We have shown that these criteria are met in the large majority of the cases.

Dr. Glick also expresses his fear that active ending of life becomes easier for Dutch physicians after the first time doing so. Previous research has shown that this is not true (2).

Our data also show that in a limited number of cases, the practice of terminal sedation seems to approximate the practice of euthanasia. In his reaction, Dr. Zylicz is concerned about the risk that terminal sedation might be used as a "surrogate" to euthanasia. We agree that terminal sedation should only be used for the right indications, after a careful decision-making process and in a medical-technically appropriate way.

1. Sykes N, Thorns A. The use of opioids and sedatives at the end of life. Lancet Oncol 2003;4(5):312-8. 2. Haverkate I, van der Heide A, Onwuteaka-Philipsen BD, van der Maas PJ, van der Wal G. The emotional impact on physicians of hastening the death of a patient. Med J Aust 2001;175(10):519-22.

Conflict of Interest:

None declared

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Summary for Patients

Doctors' Reports of Terminal Sedation without Hydration or Nutrition for Patients Nearing Death in the Netherlands

The summary below is from the full report titled “Physician Reports of Terminal Sedation without Hydration or Nutrition for Patients Nearing Death in the Netherlands.” It is in the 3 August 2004 issue of Annals of Internal Medicine (volume 141, pages 178-185). The authors are J.A.C. Rietjens, A. van der Heide, A.M. Vrakking, B.D. Onwuteaka-Philipsen, P.J. van der Maas, and G. van der Wal.

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