ETHICAL DILEMMAS FACING NURSES ON END-OF-LIFE ISSUES BASED ON CONFERENCE PROCEEDINGS HELD IN ELDORET, KENYA

Author:
Kamau S. Macharia: BScN (Moi), MSc (studying) Nursing Leadership & Health Care Systems Management (University of Colorado, Denver), Higher Dip. Critical Care Nursing (Nbi).
Graduate Assistant, School of Nursing & Biomedical Sciences, Kabianga University College (A Constituent College of Moi University), . P 0 Box 2030 20200 Kericho, Kenya , Tel +254 722224577, Email: symomash@gmail.com

ETHICAL DILEMMAS FACING NURSES ON END-OF-LIFE ISSUES BASED ON CONFERENCE PROCEEDINGS HELD IN ELDORET, KENYA

ABSTRACT
Problem Statement: A conference to discuss on ethical dilemmas is thought to be a good way of airing out issues. It is unfortunate that at times a patient in our care may die no matter what we do. Profound ethical questions on end of life issues confront the medical personnel as they watch and wait helplessly. This paper touches on ethics, law, social and public policy as they affect nursing practice.
Setting: This is a conference proceedings report augmented with a case study of Nelly from a local setting and compares it with two others from elsewhere which were also presented during the conference. Conference was organized by Federation of African Medical Students Associations (FAMSA), Eldoret 2011. The author was a presenter and discussant. This paper is a compilation of the ideas, inspirations and reflections of the significant sessions and also fulfills some of the recommendations resulting from the distinguished panelists. Objectives: -
i) To explore ethical dilemma issues on end of life which have a heavy bearing on Nurses and other health care providers. ii) To explain euthanasia as it relates to withholding treatment and the law.

Materials and method: The study is informed to some extent by deliberations on euthanasia and ‘end-of-life issues’ from the conference. Conference proceedings are a rich source of evidence based findings. A content analysis of the discussion was done. It also makes an attempt to dissect some ethical and legal issues. Included is a case study of a patient Nelly (not her real name) derived from a local setting in Kenya compared with two others from elsewhere. Consent to highlight and publish the case study was sought from a relative of the deceased. All the cases, events and places are real but these identities have been changed or withheld for ethical reasons.

Conclusion: Ethical dilemmas on end of life issues are real challenges facing the health care providers on a day to day basis. No pragmatic policy guidelines exist to safeguard the Kenyan medics. Key words: DNR, Ethics, End-of–life, Euthanasia, Dilemmas, Kenyan law

INTRODUCTION
A conference to discuss on ethical dilemmas is thought to be a good way of airing out issues. This paper touches on ethics, law, social and public policy as they affect nursing practice. Unfortunately, a patient in our care may die no matter how much we try. Profound ethical questions on end-of-life issues confront the health care personnel as they watch and wait helplessly.

In certain circumstances, a patient in Critical Care Unit (CCU) will die imminently despite availability of the best possible care including life support. Others may have had a good chance of recovery if admitted to the Critical Care Unit, but then no bed is available for this new patient as limited resources impact on CCU admissions. Donchin’s observed in 2004 (Bogner, 2004) that situations in the CCU are often fluid, the medical condition of each of the patients may be changed or perhaps hopeless.

The rapid pace of unchecked technological advances enables prolonging life by maintaining some patients on a ventilator even for years even where prognosis is poor or guarded, some even with ‘silent’ Do Not Resuscitate [DNR] orders. There may be no clear policy on DNR existing in any Kenyan hospital as yet. This dilemma often occurs in the Critical Care Unit. Profound ethical questions confront the CCU personnel as they watch and wait helplessly. Bogner, 2004 also adds that apart from the relatives the critical care primary nurse bears the greatest psychological trauma.

Herbert (1981) in a radio interview described that its depressing and stressful to see, manage or care for the brain dead patient. He regretted that the society has become less prepared for death and has come to rely on high tech medicine to work miracles…Advanced Cardiac Life Support(ACLS) has become one of the techno age’s primary end –of –life rituals, but it falls short of filing the gap left by the loss of life affirming community and family bonding ceremonies(Bogner,2004). It was also observed elsewhere by (Borgatti, 1998) that family experience of death of a loved one ought to be more binding for their family than disintegrating.

This is a ‘slippery slope’ argument of all times, remarked an intensivist in a recent discussion on Euthanasia. Nonetheless this forum drawn from a diverse audience came together to discuss it in Eldoret, Kenya at the close of The 26th General Assembly Federation Of African Medical Students(FAMSA).

The following questions formed the basis of the conference debate on end-of-life issues; (Lukoye, 2011).
1. Would it be wrong to shorten life intentionally or to prolong it unnecessarily when it is in the best interest of the patient to die?
2. A patient’s choice to refuse treatment for any reason other than suicidal must always be respected. But how do we get the consent of a patient in coma, is it by advance directives (living wills), legal surrogates/proxy, or close relatives?
3. Should we continue insisting that he or she should receive all the necessary care until eventual natural death?
4. Is it like ‘…assuming that all will be well with the unwell?’
5. Should treatment continue at the risk of the patient surviving in a severely impaired state?
6. Should the patient be allowed to die, with the risk that perhaps if treatment had continued they may have recovered?
7. Should we disregard advance directives to withdraw treatment where there is a chance that the patient will recover competence?
These questions were grouped and analyzed thematically as will be seen below

CASE STUDY 1 Nelly
Nelly (not her real name), a 56 year female patient was admitted in Critical Care Unit (CCU) of a Kenyan public hospital. She was ventilator dependent by tracheostomy. She is a retired civil servant, married and a mother of 3 children as was presented in Macharia and Kirima (2011, p24).

She was admitted with ascending paralysis which started on the lower limbs progressively to affect respiratory muscles. Nelly could not feed, move or breathe without help (mechanical ventilator). Doctors made a working diagnosis of Gullaine Barre Syndrome (GBS) or its variants [never became conclusive]. She went in and out of depression many times. She was managed by the psychiatrist with counseling and antidepressants without much improvement.

At one point after one year she summoned her three children to the bedside. Patient was only able to move the eyes. It was not possible to ascertain what exactly she communicated to them. Around the same time, a memorial service was held in CCU as a joint effort between CCU staff and the relatives.

The opinion of experts from three medical disciplines; neurosurgery, anesthesia and internal medicine (physicians) was that the condition was irreversible; it was only expected to deteriorate until death. That is, she wound never be able to live without total life support with ventilation, nasogastric tube feeding, turning and cleaning.

Nelly was very close to the CCU staff, they knew her likes and tastes; for instance she was fond of pediatric patients who got admitted the CCU bed next to hers. She had been moved through all the six CCU beds slots at different times of her stay. Her cognitive functions remained intact most of the time.

She made friends even in that state e.g. whenever a nurse would go for annual leave, one wish they had was ‘to come back and find Nelly still alive’. She was resilient and could pull through odd and ends circumstances including multiple drug resistant organisms in her spectrum etc. A silent attempt for ‘less aggressive care’ was contemplated in a ward conference to discuss way forward. The family was divided on this; however they consulted their lawyer who constrained them against seeking to terminate life.

At times stress levels could get very high among the nursing staff on advocacy and primary nursing. Nursing care was performed professionally-the patient was suctioned, put back on ventilator, bathed, fed, turned, and her dressings were done.

A written order was issued by hospital management to resume full support. Efforts were even made for fundraising for a portable mechanical ventilator to use at home. Nelly went into deep coma 3 months to her death after 1year 4 months in CCU. It was thought she succumbed, possibly due to complications of prolonged hospital stay like nasocomial infections. She had accrued a Hospital Bill of nearly Ksh 3 Million (US$37,500). A support group was founded in her honour.

CASE STUDY 2 Malcolm
As was presented in Macharia and Kirima (2011, p24). This story was broadcasted on 13th July 2010 in a documentary “Between Life and Death” On October 23rd 2010, Malcolm (not his real name) aged 33 was riding a motorcycle when he hit a truck at high speed. He was found six meters away from his bike and suffered terrible injuries, was paraplegic and was non responsive after treatment. He was believed to be in a coma until a consultant found that he was able to respond to questions by moving his eyes.

His father aged 70 gave permission for doctors to withdraw treatment. But the physician wanted to wait a bit longer. The father said, “They help open eyelids and asked him to move his eyes if he could hear them and he moved his eyes around so we knew he was not brain dead”.

Malcolm was in Neuro ICU for 6 months before a team of physicians asked him whether he was happy for them to go on treating him. He answered ‘yes’ three times showing that this was a consistent response. They then asked if he wanted to go on living. He blinked his eyes rapidly, “yes”. Malcolm could also move his head slowly an inch or two.

Some year or so earlier a friend to Malcolm had lost both legs in a car accident. Malcolm had shared with his parents at that juncture that he would not want to be kept alive if something similar happened to him. Malcolm may have changed his mind, he may never come off the ventilator but he has a chance of life to which we are all entitled. This is a case of the very person who gave advance directives apparently changing his mind when the reality of the decision strikes him (fortunately or unfortunately or he was already in it).

CASE STUDY 3 Jessica
As was presented in Macharia and Kirima (2011, p24), this was a case of a severely brain damaged 31 year old woman on feeding tube for 20 years. She collapsed in the house due to? Cardiac arrest induced by anorexia nervosa. Subsequently she got brain damaged due to hypoxia/anoxia to the brain. She could breathe and maintain her heart beat, had impaired vision and could move her limbs. She needed a feeding tube for nourishment and hydration.

Her brother, sister in-law and her husband said she had expressed a wish not to be kept artificially alive. The family had debated about life support when her grandmother was in a nursing home unconscious for weeks on a ventilator. Her husband testified that Jessica had said “if I ever have to be a burden to anybody I don’t want to live like that.”

That country’s law considered a feeding tube as a life support device at par with a respirator. It also allowed oral end-of-life wishes. Despite objections from her parents, the court ruled that she be disconnected from the life support-meaning the feeding tube. In the year 2000 orders to remove the tube were issued and eventually the tube was removed for 3 days in April 2004. This generated heated activism e.g. Jessica ‘Death by starvation-please pray for her’.

In the twenty or so times Jessica’s case was heard in the state courts, both father and mother said NO, the husband said YES. Every time the court held that it was upon her husband to make the decision. She died on 31st March 2008 (cause of death; euthanasia).it raised a lot of public outcry

In a final postscript to Jessica’s short life the autopsy conducted after her death established that her brain damage was even worse than the experts had said while she was alive, and that everything the “save Jessica” activist had said was incorrect. Her brain weighed ½ that of a healthy human being; damage that left her unable to think, feel, see or interact in anyway with her environment. There was no chance she could have recovered.

Before 1999 the state law had it that it was necessary for two physicians to determine if the patient had “a terminal condition” from which there was no reasonable probability of recovery in order to withdraw or withhold their life prolonging procedures. The revised law now allows two physicians to determine if the patient is in an end stage condition or persistent vegetative stage (PVS), (Britain and other European countries1999).

The cases of Nelly, Jessica and Malcolm have many common issues like the obvious dilemma they all created. However the last two had given advanced directives on what should happen in case they ended up in vegetative state while Nelly (above) had not given any such directives. Anecdotal evidence also shows that many Kenyans do not give advance directives or living wills.

Is The Public Getting Enlightened About End of Life Issues?
Questions are increasingly being raised about the role of health care professionals in making end-of-life decisions for patients. The general public is increasingly getting open-minded, they may already be wondering whether health care providers participate in making decisions that shorten the lives of patients or not, and if this should be accepted or not. Health care professionals must therefore anticipate this debate and prepare themselves to deal with it in advance.
Fallibility of the medical profession: clinicians may make mistakes and there may be uncertainty in diagnosis & prognosis. There may be errors in diagnosis & treatment.

Nurses’ Pledge To Uphold Ethics
‘Respect for life is above science’ observed Dr.Antoinette Kankindi a Philosophy Lecturer at Strathmore University when she made a presentation in the debate which she compared Value of life versus Euthanasia(Kankindi, 2011).

The International Council of Nurses states that, “nurses have four fundamental responsibilities: to promote health, to prevent illness, to restore health and to alleviate sufferings” (Nursing subsector policy 2006).
An extract from Nurses pledge, ‘...do solemnly pledge: That I shall abstain from unsafe practice or acts of negligence and shall not knowingly administer any harmful treatment, nor withhold necessary care…’ Nursing Council of Kenya

The Goals of medicine according to Sir William Osler is, “To cure sometimes, to relieve often, and to comfort always.” However more modern goals of medicine include: avoidance of premature death, preservation of life, prevention of disease and injury, promotion and maintenance of health, relief of pain and suffering, avoidance of harm, promotion of well-being (Varelius, 2006).

The Philosophy of Critical Care Nursing On Ethics
States that, ‘The critical care nurse will fulfill distinct functions concerned with patient quality care, and be fully responsible and accountable for patient’s dignity and safety by applying ethical knowledge based on principles of biological, physiological, behavioral and social skills’.
The curriculum for critical care nurses is designed to include some learning objectives that prepare the students to explore dilemmas on end-of-life issues in the critical care environment (curriculum for critical are nurses 2011).

Guiding Principles of Medical Ethics
There are four principles upon which medical ethics are based—autonomy (of the patient), non-maleficence, beneficence (on the part of the doctor), and justice. These principles were laid down by Beauchamp and Childress in 1979, and form the framework within which medical ethics is now normally taught to student doctors and nurses as reported in (Warnock, 2005). In autonomy we respect a patient’s right to self-determination, but surrogacy may be invoked where a patient loses the capacity to express their wishes.

While in Beneficence-we should promote good for our patient, always. In the Ethical principle of Non-maleficence states ‘First do no harm’ while the justice principle refers to distributive justice. It challenges us to ask, “What is a fair or just distribution of scarce medical resources?” Would it be fair to indefinitely sustain someone on life support when withdrawing that treatment would benefit another? (Lukoye, 2011 Appleton Consensus gives guidelines on how to deal with end-of-life decisions in various scenarios(Stanley 1989,pp15,129-139).

What then is Euthanasia?
 From Greek eu (good) thanatos (death) It means pleasant, gentle, soft death. Action or omission that causes death. Onga’any (2010) puts the purpose as: eliminate or avoid pain.
A deliberate act undertaken by one person with the intention of ending the life of another person to relieve that person’s suffering where the act is the cause of death, also defined as mercy killing of hopelessly ill or injured persons where the doctor or the family members actively participate in the death of the patient.

Voluntary- patient (with the legal/mental competence) asks for it. Involuntary- inconsistent with patients wishes, where these are known (usually in patients who have lost capacity to communicate their wishes).Non-voluntary- patient is unaware that it is being considered, whether their wishes are known or not (of life and death report 1995, pp 14).
• Ortothanasia : left to die by omitting medical assistance.
• Suicidal Euthanasia : self inflicted without help
• Homicidal Euthanasia: liberate from agony and eliminate lives devoid of value
• Direct Euthanasia & Indirect Euthanasia: to procure death
Brian Pollard (an anesthesiologist) who from 1982 founded and directed one of the Australia’s first Palliative care services distinguishes Euthanasia which he defines as a form of homicide (a crime) even if legalized from some medical actions (e.g. withholding and withdrawing treatment) that are labeled euthanasia; since the intention (mens-rea) to take life is lacking. These includes not commencing treatment that would not provide benefit to the patient, withdrawing treatment that has been shown to be in-effective, or giving high doses of opioid painkillers, that may endanger life (the legalization of euthanasia, 1982).

A Kenyan national newspaper column expressed this as: ‘I always feel uneasy about euthanasia [assisted suicide] and turning off life support machines. What if the patient is comatose physically but alive in his mind? What if he cannot communicate his wishes? What if the doctor or relatives misinterpret his signals?’(Loughran 2010)

In the case of Airedale N.H.S. Trust vs. Bland (1993); it was held that there is no valid distinction between omission to treat a patient and the abandonment of treatment which has been commenced.
Appleton Consensus gives guidelines on how to deal with end-of-life decisions in various scenarios (Stanley, 1989)

What would some of the Implications of legalizing Euthanasia?
‘One of the most important developments in recent years is the increasing emphasis placed on health care providers to contain costs. In such a climate, euthanasia certainly could become a means of cost containment...’. Moreover financial considerations, added to the concern about "being a burden," could serve as powerful forces that would lead a person to "choose" euthanasia or assisted suicide. This was the argument of (Ong’any 2010).

Upholding The Sanctity of Life Versus Euthanasia
History has taught that Euthanasia is a rejection of the importance and value of human life and that could be why there are few countries in the world today where euthanasia is legal. That is why almost all societies for thousands of years have made euthanasia a crime. There are strong religious & secular traditions against taking human life. It is argued that assisted suicide is morally wrong because it contradicts these beliefs, e.g. the Judeo-Christian worldview on ethics. In his book (Christians, 1995) asserts that man is created in the image of God. You cannot take away what you cannot give; it underscores love as a basis for ethics.

When To Resuscitate or When Not To Resuscitate
Ong’any (2010) clarifies that- DNR does NOT mean: “DO NOT TREAT!” DNR means: “DO NOT RESUSCITATE”. It is appropriate to discuss/obtain DNR status while continuing treatment, especially of recurrent/progressive/emerging disease processes.

Palliative care: Affirms life and regards dying as a normal process, neither hastens nor postpones death, this is according to the submissions by Dr. Helena Musau on palliative care to the conference FAMSA conference (Musau, 2011).

Purnell in 1998 analyzed the implications of ‘Slow Code’ -ineffective resuscitation, allowing a patient to die, A Slow code as described by Hutchinson Sally is a responsible subversion or rule bending…colluding of a premeditated act anticipated to result in a patient’s death.. Physician may put the nurses in this dilemma by tacitly not ordering a DNR when death is imminent. The decision to participate in a slow code is upon the individual nurse since a slow code is a form of passive euthanasia, and is illegal; it violates the nurses practice act.

Little is documented on Slow codes except what is covertly revealed by those who participated by word of mouth because of the need for self preservation (Purnell, 1998).

According to Mutheu and Kachulah, 2006 in their introduction they had noted the following: That ICU patients have high risk to death. The nurse caring for the dying patient and family requires many skills. The nurse must posses the ability to offer compassion, assess the multitude of symptoms that occur at the end of life and participate in symptom management.

The nurse as a member of the health care team focuses to help promote a healthy and positive dying experience for all involved. This was presented by (Mutheu and Kachulah, 2006).
Death is a process not an event. This is according to (Chumba, 2009), this sort of agrees with what Bond and Dax (Bond, 2010) wrote ‘…nor should ICU care be used to prolong the natural process of death’

Figure 1: Relatives and significant others have a critical role in making decisions on end-of-life issues (Portrait is courtesy of The Nairobi Hospice)

The law as binding all players
All professional efforts directed at solving human problems, are performed under the control of the law. The purpose for this is to increase the benefits without infringing the rights of both the individuals and the society. Medicine and the law are therefore both viewed as interlocked institutions promoting and maximising the wellbeing of physical, emotional and community health, the extent to which this is true is debatable. This was an observation by (Ochieng, 2002), sort of emphasizing that the law binds all players in as much as though ethics play a critical role during dilemmas.

Is it legal and ethical to withdraw or withhold treatment with the aim of easing the needless prolongation of dying even though death maybe foreseen as a consequence? The practice is regarded as murder in under the South African law and also in Kenyan as we shall see below.

Jurisdictions from elsewhere as It Relates To Euthanasia and Withholding Treatment (Lukoye, 2011)
The following jurisdictions allow euthanasia and Physician Assisted Suicide(PAS) to varying extents:
– Netherlands (2002), Belgium (2002)
– Luxembourg (2009)
– France (passive euthanasia legal, active illegal)
– Australia Northern Territories (allows PAS)
The United States of America-Oregon State (1997), Washington State (2009), Judicial decisions (Quinlan, Cruzan, Schiavo).
We explore The Constitution of Kenya 2011 and the Penal code here below:

The Constitution of Kenya (Ratified on 4th August 2010 referendum)
Some of the articles have empowered the citizenry to demand for the highest attainable health care, a right to access information as it relates to the services offered to them. It is therefore critical that nurses align themselves within the limits of what is expected of them.
Article 26. (1) Every person has the right to life. (2) The life of a person begins at conception. (3) A person shall not be deprived of life intentionally, except to the extent authorized by this Constitution or other written law.

What The Laws of Kenya Say About End-Life Issues
Penal Code (Cap 63)
202. (1) Any person who by an unlawful act or omission causes the death of another person is guilty of the felony termed manslaughter.
(2) An unlawful omission is an omission amounting to culpable negligence to discharge a duty tending to the preservation of life or health, whether such omission is or is not accompanied by an intention to cause death or bodily harm

213. A person is deemed to have caused the death of another person although his act is not the immediate or the sole cause of death in any of the following cases –
(d) if by any act or omission he hastened the death of a person suffering under any disease or injury which apart from such act or omission would have caused death…[In other words Euthanasia is criminalized]

218. It is the duty of every person who, except in a case of necessity, undertakes to administer surgical or medical treatment to any other person, or to do any other lawful act which is or may be dangerous to human life or health, to have reasonable skill and to use reasonable care in doing the act; and he shall be deemed to have caused any consequences which adversely affect the life or health of any person by reason of any omission to observe or perform that duty.[In other words Duty of care] Compare this to Kant’s categorical imperative, where ethics for Kant is reducible to reverence for duty for the sake of duty. Christians et al, 1995
225. Any person who - (a) procures another to kill himself ; or (b) counsels another to kill himself and thereby induces him to do so; or (c) aids another in killing himself, is guilty of a felony and is liable to imprisonment for life [In other words Physician-assisted Suicide criminalized]

Other Common acts in the laws of Kenya touching on diverse end-of-life issues
• The pharmacy and poisons act cap 244: Provides for conducting inquiries and inquests into deaths arising from suicide, accidents, homicide, or suspicious deaths
• Human tissue act cap 252: Allows for the use of bodies of deceased persons for therapeutic, purposes, medical education and research.
• The public health act: procedures of exhumations, the establishment of cemeteries, and disposal of bodies etc
• The anatomy act: Makes provisions of donating bodies to schools of anatomy. Prohibits the illegal removal of parts of the body. Cadaveric organ donation is rare in Kenya. There are no clear guidelines while Knowledge, Attitude and Practice, cultural issues complicates it.

DISCUSSION
Health care providers ought to be well informed of their ethical and legal obligations. They ought to seek out resources early, care and support the carers as they strife towards a positive and dignified outcome for the patient. ‘We have no obligation to sustain life at all costs,’ stated a clergyman who represented a mainstream church in the debate, coming short of giving its stand on the matter. ‘Whose ego are we trying to satisfy?’ an interrogative statement was made, possibly intending to strongly to affirm yet another stand by another man of the flock, a chaplain for that matter at the end of the discourse in Eldoret.

A patient seeing a doctor or the nurse enters a contract with the doctor or the hospital where the doctor or nurse works. The health care professional or the hospital owes the patient duty of service. The contract takes the form of an implied agreement for the doctor to diagnose the patient’s complaint and treat in the normal manner according to acceptable medical procedures and refer where necessary to the specialist in the field. The contract does not guarantee cure

Legalized euthanasia would most likely progress to the stage where people, at a certain point, would be expected to volunteer to be killed. It is paradoxical that laws against an action can be broadened and expanded once something is declared legal.
This is especially true for Kenya where parliamentarians have tended to pass self serving and self preservation bills.

The general public is increasingly getting enlightened, they may already be wondering whether health care providers participate in making decisions that shorten the lives of patients or not, and if this should be accepted or not. Health care professionals must therefore anticipate this debate and prepare themselves to deal with it in advance. Would it be fair to indefinitely sustain someone on life support when withdrawing that treatment would benefit another?
There may be no clear policy on DNR existing in any Kenyan hospital as yet. This is a ‘slippery slope’ argument of all times concluded Dr Frank Njenga, a prominent psychiatrist in Kenya and a discussant in the debate.

CONCLUSION
Ethical dilemmas on end of life issues are real challenges facing the health care providers on a day to day basis. The innumerable questions raised above at the beginning of the debate never got conclusive answers and may remain so for sometime to come. No pragmatic policy guidelines exist to safeguard the Kenyan medics on euthanasia or withholding treatment.

Acknowledgement
To my esteemed client through a significant other, for consenting to allow me to highlight and publish this case (see appendix for written consent). The impetuses to write this article would not probably have come to be were it not for the very lively debate organized by The 26th General Assembly Federation of African Medical Students’ Associations (FAMSA) Conference 17/2/2011 at Medical Education Complex, School of Medicine, Eldoret Kenya.
I am indebted to Dr. Lukoye Atwoli of Moi University School of Medicine for ‘Framing the Debate’. To Josphat Kirima of Moi University School of Law, for his assistance with technicalities on legal issues.

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