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Advanced Medical Directive Research paper

by Su Lim (published with permission)

 

 

Preface to the Research Paper

After completing the first draft of the Research Paper, it struck me that the value of the final product should not be confined to its form as an academic paper to be kept away in a file.  The question I posed myself is: How can I put across to the people around me in the simplest and most practical way what I have learned?  At the same time, how can I use it as an evangelical tool?

As such, I reformatted the Research Paper, and arrived at its final form as a message to friends and loved ones.  I also had a discussion with a solicitor about AMD.  The salient points are listed in Appendix 1. 

 

 

 

To My Friends and Loved Ones,

By the time you hear this message read, I am no longer with you.  This message is written so that you can understand how and why I have arrived at the decision and the instructions that I have given to my trustees.  It is composed with joy knowing that I will be meeting with my Creator.  So, it is my sincere wish that you receive the message with joy as well.

            The adage “Birth; Old age; Illness; and Death” is accepted by the Chinese community in Terengganu and elsewhere as the unavoidable four aspects of human life.  While the first three aspects are discussed quite openly, the last has been a taboo.  Nevertheless, with the passage of time, as well as increasing awareness of the importance of estate planning, society has grudgingly faced the subject of death for practical reasons.  Will writing has become more common, but instructions for dealing with matters on impending death still remain largely oral.  As these instructions are often given to a trusted one or few, they can give rise to arguments and varying interpretations by different people.  A clearly written instruction will avoid such pitfalls.  Such written instruction is called advanced medical directive (AMD).  My AMD has been deposited with Mr. A of Messrs A & Partners, Advocates & Solicitors.  It has been prepared after much prayer and seeking, as well as discussions with Mr. A and Dr. N., my family physician for many decades.  I trust these two gentlemen wholeheartedly.  My two Trustees, X and Y, have also been briefed.  I also wish to make it clear that the decision is mine, and mine alone.  As such, the responsibility rests squarely on me, not on anyone else.

            Unlike Singapore, AMD is not governed by legislation in Malaysia yet.  As such, my AMD is not legally binding.  However, it expresses my desire with regard to how my life should end.  I appreciate that this is a complex issue, and there is much room for discussion.  I shall not repeat verbatim the content of my AMD.  Let it be read to you at the appropriate time.  Ask for clarification if you have any doubt.  But if there remains any area over which you are not satisfied, I sincerely apologise for failing to meet your requirements.

            You are aware of my medical condition.  I shall not repeat the details.  It suffices to say I am terminally ill, and I have decided not to seek further treatment.  It is my decision that in the event I lapse into unconsciousness, and it is the opinion of Dr. N. and another certified medical practitioner there is no reasonable chance of me regaining consciousness, then I shall be disconnected from any form of life supporting system after three (3) days.  The details are spelled out in legal and medical terms in the AMD.  I shall not repeat them.  I know the word ‘reasonable’ can be interpreted differently.  Here, I apply the level of reasonableness as one that is applicable to certified medical practitioners, not faith healers – not that I don’t believe in faith healing.  It is my wish that the opinion of the two medical practitioners not be challenged.

            My Last Will and Testament on the distribution of my estate and funeral arrangements is a legally binding document.  I leave it to P and Q, who are the Administrators of my estate, and Mr. A, to arrange for the appropriate time to read it to the beneficiaries.

            Humanly speaking, there is no reversal of death.  Therefore, it is crucial that one is clear about the meaning of death before one puts in writing his instructions dealing with his own death.  So, let me now share with you, briefly, some of the key issues I have considered before finalising my AMD.  First of all, it is my conviction that my life is a gift from God, my Creator.[1]  As He freely gives, He also has the right to freely take it away.  The Bible sums up succinctly that “There is a time for everything …a time to be born and a time to die …” Hence, it is my duty to discern when is the right time to surrender my life back to its Giver.  I also believe that human knowledge, including medical expertise, is also gift from God.  After consulting Dr. N and seeking second opinion from an oncologist, I understand that my condition is such that “the prognosis is so poor that there is virtually no chance of improvement.”[2]     It is time for me to let go.

In its earliest form, death is considered to have occurred when one’s breathing and heartbeat stops.  However, the advancement in medical science, with the introduction of cardiopulmonary resuscitation and bypass; and later heart transplantation, the understanding of death has changed.  In fact, “the cessation of the heartbeat (even if permanent) was not sufficient to cause death.”[3]  As laymen, “brain death” is what we have now come to accept as meaning death.  I shall not go into the details.  However, you are welcome to get a copy of JM Elliot’s paper on this subject from Dr. N.

To put it simply: I do not wish my breathing and heartbeat to be sustained by a life support machine while I lie unconscious and oblivious to what goes on around me.

I am not going into the philosophical discussion as to whether death is a part of life. Some opine that to be a part of life, that something must be experienced.  As death cannot be experienced in life, it cannot be part of life.  But I would say that death is simply part and parcel of my journey on earth.  It holds an element of uncertainty as I do not know what exactly will happen at the point of death.  It is natural that uncertainty brings doubt and fear.  And that seems to be our society’s general feeling.  However, I know I have a Creator who has gifted me with this life, and I trust Him.  When I seek him with all my heart, I know that my end on earth is both “timely, and may also be beautiful.”[4]

            I have heard people saying, “I am not afraid of death, but its process.”  One of the problems of my illness is pain.  Pain impacts me, as well as those around me.  Much as my caregivers love me, it is difficult for them to share in my pain.  Stanley Hauerwas writes, “Pain not only isolates us from one another, but even from ourselves.”[5]  There have been times I wish the parts of my body that feel the pain can be severed.  So, pain has created a burden, a wall; and I often become hesitant to admit that I am in pain.  But Dr. N and my family members know that there is no escaping from pain for me.  And they have helped me to deal with that pain through medication and emotional support, and have given me the comfort I so badly need, so that I am not crippled and disfigured by pain.  Members of my church and House Group have come by to pray with, and for me.[6]  Some of them set aside their time simply to be present with me.  They have helped me to maintain my dignity and value.

            My observation of our society is that dignity comes with the idea of “usefulness.”  We are fearful of becoming a “useless” person.  In fact, that is the way I have been brought up – to value human life in economic terms.  At the same time, I also know that I am created in the image of my Creator, and there is something of infinite value in this image, despite the human condition I may be in.  I struggle with this seeming contradiction until I came across two videos while attending a course.  The first was that of Brittany Maynard.  At age 29, while in full blossom of her life, she chose to end it when she discovered that she had an incurable medical condition.  She did so on 02 November, 2014, I could not help but be moved by the passion and logic of her appeal for euthanasia, for a death in dignity.  Yet there was another video, that of an interview with the old and dying Morrie.  In contrast to Maynard who was in total control of herself, Morrie was shrivelled and could not even put on his reading glasses by himself with his trembling hands; and his speech was slurred.  But as he spoke on during the interview, a tremendous sense of dignity emerged from this seemingly helpless man – a “useless” man by my standard.  And I realised that his dignity, and the value of his life, lie not in him possessing the full capacity of his body, but in him as a precious creation by the Creator.  Words fail me, I confess.  If you are interested, please ask Susan, my wife, and she will direct you to the course speaker.  It also needs to be said that while my illness has weakened me physically, it has served to strengthened my faith and trust in God.  Strength through weakness seems paradoxical, but it is true.[7]

            You may wonder if my AMD tantamount to euthanasia or suicide.  Euthanasia is commonly defined as “the act of bringing about the death of a helplessly ill and suffering person in a relatively quick and painless way for reasons of mercy.”[8] There are various forms of euthanasia, namely: active, passive, involuntary, voluntary, and non-voluntary.  The common characteristic is that one person ends the life of another.  As for suicide, it can be understood as “the act of intentionally taking one’s life and is distinguished form natural death,”[9] AMD is decidedly not the same.  My decision is simply not to seek treatment so that death may come naturally. 

            Since death cannot be avoided, dying a good death is then the next best thing.  Perhaps you have heard various good death wishes such as dying while watching the football World Cup final, and the likes.  All these have one common feature: instantaneous and painless death.  But it is not to be for me.  The attributes of a good death include, among others: being in control, being comfortable, having a sense of closure, trust in care providers, recognition of impending death, optimisation of relationships, appropriateness of death, and family care.[10]  Though painlessness is not explicitly stated, it is embedded in “being comfortable” and “trust in care providers.”

            I mentioned earlier that my life is a gift from my Creator.  That being the case, this body is not mine to own, though I have the duty to care for it.  I have thought about the subject of organ donation, for I am willing to give away any part of my body to help another person.  However, I was told that, at my age and the in my condition, my body is already well worn out, and is unlikely to be of use to another person.

            I am reticent by nature, not used to words, especially words of affection – Susan will attest to that.  She has told me I should not be embarrassed about showing my deep feelings.  So, before I end, let me say this: I want to thank all of you for loving me; and I want to say I love you too.  Please forgive me for the wrongs I have committed against you, whether in words or actions, consciously or unconsciously.  And if you should be embarrassed to speak as I do, let me say that, likewise, I forgive you for the wrongs committed against me too.

            Finally, this is not the end of everything.  It may be the end of this chapter of my life on earth, but in the book of my life, it is the beginning of a new, glorious and unending chapter in heaven.  I long for the day when we will meet again.

 

 

                                                                                                                        Appendix 1

Discussion with a Solicitor

            Salient points of the discussion with a solicitor, Mr. S, are as follows:

1.     Mr. S is aware of the existence of advanced medical directive (AMD) in Singapore.  However, he is not familiar with the exact details of the legislation. 

2.     Mr. S mentioned that the late Mr. Lee Kuan Yew had one drawn up, and that the late Mr. Lee’s family members carried out the instructions, though somewhat reluctantly.

3.     There is no legislation for AMD in Malaysia.  Hence, any form of such instruction, whether oral or written, is not legally binding.

4.     However, there have been cases of informal oral AMD given by the dying persons to their family members.  In some cases, such oral instructions have given rise to bitter family disputes, especially where there are differing religious beliefs.  Timing of death before full gathering of family members for the purpose of paying last respect is also an area of dispute.  AMD has not been an issue in the distribution of a deceased person’s estate when a last will and testament covers it.

5.     It is preferable that two independent medical practitioners be involved in giving the medical opinion pertaining to the AMD.

6.     Reasonableness test applies – to the level of expertise of the medical practitioners.

7.     Two family members, instead of one, should be named in the AMD to instruct the medical practitioners to carry out their duties.

8.     The Administrator(s) named in the last will and testament should not be the same person(s) as the two named in the AMD to avoid any conflict of interest.


 

Bibliography

 

Elliot, J. M. "Brain Death." Trauma 5, no. 1 (2003): 23-42.

Gustafson, James M. "The Transcendence of God and the Value of Human Life." In On Moral Medicine: Theological Perspectives in Medical Ethics, ed. Stephen E. Lammers and Allen Verhey, 158-164. Grand Rapids, MI: William B. Eerdmans Publishing Company, 1998.

Hauerwas, Stanley. "Salvation and Health: Why Medicine Needs the Church." In On Moral Medicine: Theological Perspectives in Medical Ethics, ed. Stephen E. Lammers and Allen Verhey, 72-83. Grand Rapids, MI: William B. Eerdmans Publishing Company, 1998.

Kehl, Karen A. "Moving toward Peace: An Analysis of the Concept of a Good Death." American Journal of Hospice and Palliative Medicine 23, no. 4 (2006): 277-286.

National Council of Churches of Singapore – Statement on Euthanasia

Ramsey, Paul. "The Indignity Of "Death with Dignity"." In On Moral Medicine: Theological Perspectives in Medical Ethics, ed. Stephen E. Lammers, 209-222. Grand Rapids, MI: William B. Eerdmans Publishing Company, 1998.

Tang, Alex. A Good Day to Die: A Christian Perspective on Mercy Killing. Singapore: Genesis Books, 2005.  

 


 

[1] James M. Gustafson, "The Transcendence of God and the Value of Human Life." In On Moral Medicine: Theological Perspectives in Medical Ethics, ed. Stephen E. Lammers and Allen Verhey (Grand Rapids, MI: William B. Eerdmans Publishing Company, 1998), 169.

[2] Alex Tang, A Good Day to Die: A Christian Perspective on Mercy Killing( Singapore: Genesis Books, 2005), 118.

[3] J.M. Elliot, "Brain Death." Trauma 5, no. 1 (2003), 24.

[4] Paul Ramsey, "The Indignity Of "Death with Dignity"." In On Moral Medicine: Theological Perspectives in Medical Ethics, ed. Stephen E. Lammers (Grand Rapids, MI: William B. Eerdmans Publishing Company, 1998), 212.

[5] Stanley Hauerwas, "Salvation and Health: Why Medicine Needs the Church." In On Moral Medicine: Theological Perspectives in Medical Ethics, ed. Stephen E. Lammers and Allen Verhey (Grand Rapids, MI: William B. Eerdmans Publishing Company, 1998), 79.

[6] Stanley Hauerwas, "Salvation and Health: Why Medicine Needs the Church", 82: “For prayer is not a supplement to the insufficiency of our medical  knowledge and practice; not is it some divine insurance policy that our medical skill will work; rather, our prayer is the means that we have to make God present whether our medical skill is successful or not.”

[7] Stanley Hauerwas, "Salvation and Health: Why Medicine Needs the Church", 74: “… the “central paradox” in the New Testament: Strength comes only through weakness.  This strength is Christ’s strength that comes only through dependence upon him.”

[8] National Council of Churches of Singapore – Statement on Euthanasia, 1.

[9] Alex Tang, A Good Day to Die: A Christian Perspective on Mercy Killing, 10.

[10] Karen A. Kehl, "Moving toward Peace: An Analysis of the Concept of a Good Death." American Journal of Hospice and Palliative Medicine 23, no. 4 (2006): 281-282.

 

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