Viktor Koelzer and Sara Brittingham debate the ethics and standards of euthanasia and palliative care

The attending physician remarked “the most difficult lesson you will learn is to stand back and let go.” In her case it meant avoiding another unnecessary procedure. I recall meeting Mrs. M on the morning ward during my oncology rotation a couple of months ago. Mrs. M was still quite young compared to the other patients but this I only found out by going through her chart. Her strikingly yellow skin and the bloated abdomen disclosed her disease. She had end stage pancreatic cancer and was in constant need of pain medication. “She is too weak to receive another bout of chemotherapy, we might lose her this way”, my attending said while we were discussing her case. “But she is still so young”, I thought helplessly, “Is there really nothing positive that we can offer her”?

Studies have shown that misinformation and insecurity exists about providing end-of-life care in the medical profession (1). Especially medical students profit from an open discussion and information about end-of-life care, leading to more security and confidence in their work with terminally ill patients (2,3). Our aim is therefore to provide an overview of historical, ethical and legal aspects of palliative care (PC) and voluntary euthanasia (VE) in Europe. We will thereby focus on common values and current problems of these approaches.

In our opinion providing adequate end-of-life care should include compassion and respect, while at the same time adhering to the law and ethical principles of the society we live in. In this way, PC reaches out to terminally ill patients’ with the WHO defining it as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness […] through the prevention and relief of […] pain and other problems, physical, psychosocial and spiritual” (4). The concept of VE is defined by the European Association for Palliative Care as a “doctor intentionally killing a person by the administration of drugs, at that person’s voluntary and competent request” (5).

We feel that above all understanding patients’ needs in the last phase of life is a prerequisite for providing adequate care. A cross-sectional study surveying patients, families and physicians considered “pain management, communication, […] and being treated as a whole person” to be among the most important necessities (6). In reference to a recent study by Hurst and Mauron, we want to point out that PC and the movement for legalization of VE attempt to answer to these concerns reflecting common values (7): The focus of both approaches lies primarily in the importance of reducing human suffering. Both movements recognize the concept of “total”, multi-dimensional pain “including […] physical, emotional, social and spiritual suffering”. This state is seen as the “worst evil” that should be averted at all costs. PC attempts to reach patients’ “total suffering” in a holistic approach of “total care” with multidisciplinary teams comprised from all specialties, especially focusing on professional pain management, spiritual and psychological support. Proponents of VE recognize the need for an answer to “existential suffering” as well, but see this as an important reason for patients to request a painless, “good” death. A further value emphasized by both approaches is the common concern that end-of-life care should not reduce the human being to the biological (7). Chronically ill or terminally ill patients usually have multiple medical problems. The highly specialized health care system of today responds primarily to the needs of various organ systems, losing sight of the whole person. Care for the whole human being is realized by PC providers with a focus on “compassion” in the concept of “total care”. Proponents of VE feel that this goal is best met by providing the patient absolute control over their fate “up to and including the choice of seeking assisted death” (7).

PC providers and supporters of VE both focus on the importance of patient autonomy in order to avoid unnecessary suffering, but the implementation of this concept is a controversial issue. For VE legalization advocates empowering the patient means to provide the possibility of freely choosing assisted death (8). PC providers hold “that autonomy cannot include the right to choose assisted death, since death puts an end to autonomy itself” (8,9). They see the stabilization of the remaining capabilities of terminally ill patients in the concept of “total care” as a prerequisite for acting out autonomous decisions (7).

The coexistence of VE and PC does not only pertain to common values but a common history that is evident in the literal translation of the term euthanasia meaning “good death”, derived from the greek words Thanatos (θάνατος, death) and the prefix Eu- (εὔ, good). In our view the aim of providing this last service to patients may be the common root of VE and PC throughout history. In the early stages of medicine, hardly any disease could be cured; instead, the patients were accompanied and comforted, trying to palliate suffering (10). One of the earliest medical codices, the Hippocratic Oath (400 B.C.), stated that doctors must never “give deadly medicine to anyone if asked nor suggest any such counsel”. This definite statement leads us to assume that disagreements about medically assisted death were already a matter of debate during this time. With the rise of Christianity in Europe, arguments against VE were further based on religious beliefs. Thomas von Aquin (approx. 1225-1274), one of the most important Catholic scholars of the middle ages stated in his main work “Summa Theologiae” that not only killing but also suicide was a capital sin, and emphasized the Christian virtues of “caritas” (Lat. benevolence) and “misericordia” (Lat. mercy) in the care of patients. In our opinion these values are still central in PC today, emphasizing the Christian roots of the PC movement.

The co-existence of both approaches is also certainly evident in the recent political developments in Europe. The Netherlands legalized VE as the first European country in April 2002 (11). At the same time, a right for PC to every patient was constitutionally guaranteed, emphasizing the political support for both approaches (11). The legalization of VE is the result of leading Supreme Court decisions from as early as 1984 that lead to a non-prosecution agreement in 1990 between the Dutch Ministry of Justice and the Royal Dutch Medical Association setting out criteria of due care for physicians who actively participated to end the lives of patients with a terminal disease (12). Among the most important are the informed consent of the patient, the prolonged and unbearable suffering, lack of medical alternatives and the retrospective report of any case of VE to ethical control commissions (12). Belgium followed the Dutch initiative for legalization of VE in 2002, and the Luxemburg parliament adopted a similar bill in February of 2008 which is expected to come into force before the end of this year (12).

Figure 1

In the light of these developments the vast majority of medical associations in Europe rejected the concept of VE. A possible erosion of ethical, legal and psychological barriers on a slippery slope towards a practice of killing of underprivileged groups and the possibility of facilitating involuntary euthanasia of incompetent patients were among the most important reasons named for this action (see Fig.1). On the contrary proponents of VE point out that legalization is an important step to facilitate societal control of VE (Fig.2). We feel it is important to analyze central government initiated studies from the Netherlands from the years 1990, 1995, 2001 and 2005 as the only country with a considerable history of legal VE, to seek evidence speaking for or against these concerns. (14-16).

Figure 2

Approximately 40 percent of all annual deaths in the Netherlands (>120,000) were preceded by the intentional life-shortening acts of withholding or withdrawing treatment (15-20%), intensified alleviation of symptoms (18-25%), or VE which accounted for an estimated 8-10.000 deaths a year in all four years of the study period (14,15). Legalization of VE has resulted in several important trends: The rate of euthanasia has stabilized at about 1.7% of all deaths breaking with a consistent upward trend since 1990 (15). At the same time, the reporting rate of euthanasia cases to control commissions has constantly risen from a mere 18.0% before 1990, when the practice of VE was illegal, to 80.2% in 2005 (15). Decisions in earlier study periods had often been made by individual doctors, without consultation of other medical professionals or relatives (16). Today doctors seek open discussion with colleagues in a majority (87.7%) of cases and in 75.5% with relatives of the patient (16). It seems to us that the slippery slope of a slow but steady increase in case numbers of VE, a low reporting rate, and decision making without consultation is beginning to be stabilized by clear legislation and control criteria. However there is still significant room for improvement as every fifth case of VE is enacted without control, and we feel that the decision must urgently be discussed with other caregivers of the patient and relatives in every single case to reach a reliable decision.

A trend towards stabilization of VE may also not defer from the fact that the cited government initiated studies uncovered a significant and worrisome number of cases of involuntary euthanasia where mostly incompetent (79%) (14), helpless patients are killed without informed consent (14-16). Several high-impact studies report that an estimated 900 to 1000 patients per year were killed involuntarily from 1990-2001; legalization led to a drop in these numbers to about 500 cases a year (14-16). Another troubling development is the recent proposition of the “Groningen Protocol” in the Netherlands which, if adopted by the government, would allow an extension of the practice of euthanasia to newborns “for whom a very poor quality of life, associated with sustained suffering, is predicted” (17). As we pointed out, the primary justification given for VE in terminally ill patients is respect for patient autonomy. This justification by autonomy is “obviously absent” in the case of incompetent helpless patients and infant euthanasia (18). In our opinion the continued killing of patients without informed consent is a central argument demonstrating the dangerous extension of euthanasia to the dependent and helpless population.

As for the VE legalization movement a heterogeneous development for PC within Europe can be observed. Whereas most Western European countries and the UK have successfully implemented PC programs for terminally ill patients, “in many places (especially in Eastern Europe) PC is not featured in the medical curriculum at all” (19). In recognition of these developments the European Health Committee prepared a set of European guidelines in 2003, calling on all countries to formulate national programs (20). Yet follow up studies almost five years later do not show significant improvement of the situation with a patchwork of services especially in Central and Eastern Europe without central organization and national guidelines in many cases (19, 21). In our view, the data that 12 of the 27 EU member states provide three or less hospice services per one million inhabitants demonstrates that PC is still very much underutilized in large parts of the EU (21). Among these are even well developed countries like Denmark, the Czech Republic, Portugal, Greece, and the Ukraine. In this way we feel that the major problem of PC provision in Europe does not lie as much in controversies over the concept of PC itself, as shown in the agreement over international guidelines but in the lack of a consequent implementation.

In summary we feel that it may be impossible to view PC and VE from a single perspective. Open dialogue between PC providers and VE proponents seems to be essential to promote an understanding of the respective position, and to focus on common ground that will benefit the patient. A basis for this process has been laid in a common history, a common aim, and common values. We recognize that there are important differences and disagreements, yet end-of-life care may not be a black and white issue. In our opinion the best way to clear out misunderstandings and counter insecurity is by promoting an educated discussion, beginning in medical training. To this end, we have analyzed central studies about the implementation of PC in Europe and about the present practice of VE in the Netherlands. For VE we demonstrated that the legalization seems to have broken the trend of continuously rising case numbers, with positive effects on the reporting rates to ethical control commissions, and on communication with other caregivers about individual cases. However, a considerable number of worrisome cases of involuntary euthanasia and a possible extension to vulnerable populations are evident. In our view this malpractice must be stopped immediately. Current studies about the implementation of PC demonstrate a very heterogeneous situation in Europe. We feel that the unified approach towards the implementation of a set of general guidelines as proposed by the European Health Committee may greatly benefit terminally ill patients by providing a reliable framework for care.

Viktor Koelzer and Sara Brittingham are 5th year medical students at the Technical University of Munich.

sara.brittingham[at]gmx.de

vkoelzer[at]googlemail.com

References

(1) N Ahmed, J E Bestall, S H Ahmedzai, S A Payne, D Clark and B Noble. Systematic review of the problems and issues of accessing specialist palliative care by patients, carers. Palliat Med. 2004; 18; 525-42

(2) Buss MK, Marx ES, Sulmasy DP. The preparedness of students to discuss end-of-life issues with patients. Acad Med. 1998; 73: 418–22

(3) Ross DD, Shpritz D, Hull MM, Goloubeva O: Long-term evaluation of required coursework in palliative and end-of-life care for medical students. J Palliat Med. 2005; 8: 962–74

(4) http://www.who.int/cancer/palliative/definition/en WHO Definition of Palliative Care. (Accessed on November 18th, 2008)

(5) Materstvedt LJ, Clark D, Ellershaw J, Førde R, Gravgaard AM, Müller-Busch HC, Porta i Sales J, Rapin CH. Euthanasia and physician-assisted suicide: a view from an EAPC Ethics Task Force. Palliat Med. 2003; 17(2):97-101

(6) Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000; 284(19):2476-82

(7) Hurst SA, Mauron A. The ethics of palliative care and euthanasia: exploring common values. Palliat Med. 2006; 20(2):107-12

(8) Roscam Abbing HDC. Dying with dignity, and euthanasia: a view from The Netherlands. J Palliat Care. 1988; 4(4):70–74

(9) Gordijn B, Janssens R. The prevention of euthanasia through palliative care: new developments in The Netherlands. Patient Educ Couns. 2000; 41(1):35-46

(10) Pastrana T, Jünger S, Ostgathe C, Elsner F, Radbruch L. A matter of definition–key elements identified in a discourse analysis of definitions of palliative care. Palliat Med. 2008; 22(3):222-32

(11) http://www.reuters.com/article/worldNews/idUSL2011983320080220 Luxembourg parliament adopts euthanasia law. (Accessed on November 15th, 2008)

(12) Bosshard G, Broeckaert B, Clark D, Materstvedt LJ, Gordijn B, Müller-Busch HC. A role for doctors in assisted dying? An analysis of legal regulations and medical professional positions in six European countries. J Med Ethics. 2008; 34(1):28-32

(13) van der Maas PJ, van der Wal G, Haverkate I, de Graaff CL, Kester JG, Onwuteaka-Philipsen BD, van der Heide A, Bosma JM, Willems DL. Euthanasia, physician-assisted suicide, and other medical practices involving the end of life in the Netherlands, 1990-1995. N Engl J Med. 1996; 335(22):1699-705

(14) Onwuteaka-Philipsen BD, van der Heide A, Koper D, Keij-Deerenberg I, Rietjens JA, Rurup ML, Vrakking AM, Georges JJ, Muller MT, van der Wal G, van der Maas PJ. Euthanasia and other end-of-life decisions in the Netherlands in 1990, 1995, and 2001. Lancet. 2003; 362(9381):395-9

(15) van der Heide A, Onwuteaka-Philipsen BD, Rurup ML, Buiting HM, van Delden JJ, Hanssen-de Wolf JE, Janssen AG, Pasman HR, Rietjens JA, Prins CJ, Deerenberg IM, Gevers JK, van der Maas PJ, van der Wal G. End-of-life practices in the Netherlands under the Euthanasia Act. N Engl J Med. 2007; 356(19):1957-65

(16) van der Heide A, Deliens L, Faisst K, Nilstun T, Norup M, Paci E, van der Wal G, van der Maas PJ; EURELD consortium. End-of-life decision-making in six European countries: descriptive study. Lancet. 2003; 362(9381):345-50

(17) Verhagen E, Sauer PJ. The Groningen protocol–euthanasia in severely ill newborns.N Engl J Med. 2005; 352(10):959-62

(18) Jotkowitz AB, Glick S. The Groningen protocol: another perspective. J Med Ethics. 2006; 32(3):157-8

(19) Martin-Moreno JM, Harris M, Gorgojo L, Clark D, Normand Ch, Genteno C. Policy Department Economic and Scientific Policy. Palliative Care in the European Union. May 2008; www.sfap.org/pdf/0-J7-pdf.pdf (Accessed on December 8, 2008)

(20) The Council of Europe. Recommendation Rec (2003) 24 of the Committee of Ministers to member states on the organisation of palliative care. http://www.coe.int/t/dg3/health/Source/Rec(2003)24_en.pdf (Accessed on December 8, 2008)

(21) Centeno C, Clark D, Lynch T, Racafort J, Praill D, De Lima L, Greenwood A, Flores LA, Brasch S, Giordano A; EAPC Task Force. Facts and indicators on palliative care development in 52 countries of the WHO European region: results of an EAPC Task Force. Palliat Med. 2007; 21(6):463-71

The illegal manufacture and sale of ineffective counterfeit pharmaceuticals deliberately targets the sick and disadvantaged. Despite the inexpressible immorality of this practice, it has been estimated that fake medicines comprise anywhere between 1-50% of total drug sales around the world [1]. Low detection rates, underreporting, and a lack of universally accepted definitions have made accurate estimations difficult, however the ubiquity of pharmaceuticals in both the developing and developed world means even the most conservative approximation of 1% translates into a staggering number of people. The problem is further compounded by the prevalence of substandard or low quality drugs, particularly in nations without effective drug regulatory agencies. The image of patients carefully taking their medication, yet dying from treatable diseases is deeply disturbing. In the face of such an alarming situation, many in the mainstream medical community still do not appreciate the enormity and seriousness of this issue.

Defining the problem

The World Health Organization (WHO) describes counterfeit drugs as medicines that are packaged in such a manner meant to purposefully mislead [1]. A variety of factors have contributed to the global proliferation of fake drugs including escalating prices, demand exceeding the available supply, the absence of established regulations in many countries governing the manufacture or importation/exportation of drugs, and a lack of enforcement of existing regulations. Although the majority of counterfeit drugs originate in Asia (particularly India and China) and are then disseminated to underdeveloped nations [2], the Western world is not exempt from the trend. In 2001, for instance, an American pharmacist confessed to diluting thousands of chemotherapy prescriptions prior to their distribution to cancer patients [3]. While it might be expected that the more expensive “lifestyle” drugs would be the most common victims of counterfeiting, at least 206 counterfeit cases of cheap anti-infective medications have been reported in 38 different countries [4]. Sadly this is a severe underestimation of the problem, as only 5-15% of the 191 WHO member states actively report cases of drug counterfeiting [4].

Substandard drugs are defined broadly as those that do not meet the quality requirements that have been set for them [5]. While the deliberate counterfeiting of drugs may inspire greater outrage, it is accepted that substandard products represent a far larger threat to the population. Many factors can render a drug substandard including sub-optimal or excessive dosage, poor chemical stability, packaging problems, and contamination. The prevalence of low quality drugs can be attributed to the fact that 30% of WHO member states have no functioning drug regulation policies in place [6]. Additionally, the onus of determining efficacy and safety of drugs is placed on the countries where they are to be distributed. The result is that medicine destined for international aid or development programs often faces no regulation at all, as in these locations the infrastructure to implement these types of programs simply does not exist [5].

Consequences of ineffective medicines

The inability to treat diseases is only one complication of counterfeit and substandard medicine. The possibility that drugs containing suboptimal amounts of active ingredients will help to increase the spread of drug resistant pathogens is a very real concern. Examples include South-East Asia, where the prevalence of counterfeit artesunate based anti-malarial medication approaches 50% and is contributing to growing drug resistance [7]. Health risks are also not limited to a lack of effect. The contamination of pharmaceuticals has more than once resulted in mass casualties, as occurred in Haiti in 1995, where nearly 100 Haitian children died of acute renal failure due to diethylene glycol poisoning from contaminated cough syrup [8]. Lastly, the loss of confidence in medicine by practitioners and patients alike is troubling yet difficult to quantify.

Recommendations

A series of recommendations has been proposed to help fight the spread of counterfeit drugs. These include increasing support for countries that do not have functioning drug regulation policies and increasing the availability of cheap, good quality medicines; also legislating mandatory reporting of any substandard or counterfeit drugs to the national regulation agency and establishing severe penalties for those involved in the counterfeit drug trade [4]. The WHO has also formed the International Medical Products Anti-Counterfeiting Taskforce (IMPACT), designed to fight counterfeiting through increased awareness and international collaboration [1].

The problem of substandard medication will be much more difficult to address. Enforcing a drug inspection policy has been shown to substantially improve drug quality; however this requires resources and infrastructure that may not always be available [9]. The WHO also promotes education campaigns recommending purchasing from licensed pharmacies, but their effectiveness remains unknown [10]. The development of functional pharmaco-vigilance systems in all countries is paramount, even if it requires diverting aid funds from other projects. Without a consistent and reliable source of effective medication, the future of healthcare initiatives in any location is in jeopardy.

Progress in the fight against ineffective medication has been slow; however the situation is finally starting to attract the attention it deserves. Student-led initiatives such as Universities Allied for Essential Medicines have done commendable work in raising awareness about the dangers of ineffective medicine- but there is still a long way to go. In the mean time physicians around the world must educate themselves. In an age of escalating drug prices and online pharmacies it is imperative that patients and healthcare providers alike remain informed; to halt the spread of these deadly drugs and ensure that they do not strike close to home.

References

(1) WHO. Combating counterfeit drugs: a concept paper for effective international collaboration. http://www.who.int/medicines/events/FINALBACKPAPER.pdf (accessed November 28, 2008).

(2) OECD. The Economic Impact of Counterfeiting and Piracy. Paris, France: OECD Publishing, 2008.

(3) D Young. Pharmacists work to regain public’s trust after Kansas City scandal. Am J Health Syst Pharm 2002; 59(9): 814, 820.

(4) Newton P, Green MD, Fernández FM, Day NPJ and NJ White. Counterfeit anti-infective drugs. Lancet Infect Dis 2006; 6: 602-13.

(5) Caudron J-M, Ford N, Henkens M, Macé C, Kiddle-Monroe R and J Pinel. Substandard medicines in resource-poor settings: a problem that can no longer be ignored. Trop Med Int Health 2008; 13(8): 1062-72.

(6) WHO Medicines Strategy 2004-2007. http://whqlibdoc.who.int/hq/2004/who_edm_2004.5.pdf (accessed November 28, 2008).

(7) Newton PN, Fernández FM, Plancon A et al. A Collaborative Epidemiological Investigation into the Criminal Fake Artesunate Trade in South East Asia. PLoS Medicine 2008; 5: 209-219.

(8) O’Brien KL, Selanikio JD, Hecdivert C, et al. Epidemic of pediatric deaths from acute diethylene glycol poisoning. Journal of the American Medical Association 1998; 279: 1175-180.

(9) Syhakhang L, Lundborg CS, Lindgren B and G Tomson. The quality of drugs in private pharmacies in Lao PDR: a repeat study in 1997 and 1999. Pharm World Sci 2004; 26: 333-38.

(10) WHO. Counterfeit drugs – guidelines for the development of measures to combat counterfeit drugs. WHO/EDM/QSM/99.1. Geneva: WHO, 1999.

Paxton Bach

University of British Columbia, Experimental Medicine Program

Gurdeep Mannu writes on the philosophy of utilitarianism and how it can be applied to medical ethics. 

Osler famously describes medicine as an art, and we as medical students are future practitioners of this art. Science and art do not mix more so than in the ethics and morals by which we practice. It is essential for medical students worldwide to appreciate the moral implications of the medical decisions they make. This is despite the fact that philosophy and bioethics is a topic which is to a large part neglected in many undergraduate medical curriculums in spite of recent reforms. This article reviews the common philosophical theory of utilitarianism and examines this doctrine in the context of a medical dilemma.

This article first gives a brief account of the theory. It then discusses its various forms and respective strengths and weaknesses. These points will then be explored in the framework of a modern ethical dilemma in healthcare in order to ascertain whether utilitarianism in all its variations, is sufficient to explore all of the ethical dimensions of such a problem a student or doctor may face. (more…)

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The pharmaceutical industry and the medical profession are uneasy bedfellows as Tom Jaconelli discusses

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Would you ever blow the whistle? Elizabeth Leyland explains more about this potentially career wrecking activity

From childish taunting in the playground to kiss-and-tell exposés, whistleblowing affects everybody at some stage of their lives. It raises awareness of ‘naughty’ behaviour, but is almost invariably damaging and very difficult to reverse. In healthcare there are particularly high stakes: lives, jobs and money are potentially at risk if inappropriate practice goes unchecked. If whistleblowing is used too freely the repercussions can be especially severe. I want to tune in to some of the difficulties associated with whistleblowing in a healthcare setting. With these in mind, I will consider the balance between moral responsibility and personal cost of ‘whistling while you work’.

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