Terminal Illness

'Proponents of physician-assisted suicide advocate its legalisation for those who are terminally ill. Opponents are concerned that safeguards to prevent non-voluntary euthanasia won't work.

  • 'Most legal documents regarding euthanasia do not provide an adequate definition of what illnesses are "terminal."
  • 'Treatable depression, rather than the terminal illness itself, usually accounts for such a patient's expression of a wish to die.
  • 'There are several stages of grief to work through. The last two are reconciliation of grief and hope. Euthanasia denies the chance of reaching these last stages.
  • 'Given growing pressures to contain medical costs, if assisting suicide is legalised, many terminally ill patients will feel they have a duty to die.
  • 'In The Netherlands the practice of non-voluntary euthanasia is growing.
No! It's not feeling ill at the airport!

A terminal illness is one from which there is no expectation of recovery. The problem however lies not in the definition but in the interpretation of the definition.

In the Netherlands where euthanasia is legal, terminal has a concrete definition, it literally means "concrete expectancy of death".

In Oregon where assisted suicide is legal in 'terminal cases', terminal is described as a condition which will "within reasonable judgement, produce death within six months."

This is also a common time frame reference for health care/insurance providers.

Both advocates and opponents of euthanasia are against a six month standard applying to terminal illnesses, although for different reasons. The World Federation of Right to Die Societies Newsletter states:

"It not only calls on doctors to make an unreliable prediction, but prescribes a pointless time limit: The longer the life expectancy the greater the patient's suffering. The essential elements for legislation are that the condition is irremediable by medical treatment and the suffering is intolerable to the patient." (1)
References to terminal illness, has been replaced with such phrases as "hopelessly ill," "desperately ill," "incurably ill," "hopeless condition," and "meaningless life."


Dr Jack Kervorkian, who performed a 'live' euthanasia for the benefit of television cameras feels that a terminal illness can be classified as "any disease that curtails life even for a day." (2)

Increasingly, however, euthanasia activists have dropped references to terminal illness, replacing them with such phrases as "hopelessly ill," "desperately ill," "incurably ill," "hopeless condition," and "meaningless life."

With this many variables, using terminal illness as a basis for legislation involving euthanasia and assisted suicide can become as vague as the interpretation itself.

Phases
A terminal (life-threatening) disease can be described as having five phases: first there is the phase before diagnosis, then there is the acute phase, the chronic phase, the recovery phase, and finally the terminal phase.
  1. Before Diagnosis - a period of time when a person begins to recognise symptoms and realises that he or she may have contracted an illness. There is no one particular moment of recognition but a growing awareness something is wrong.
  2. The acute phase - when diagnosis occurs and the person is then forced to understand their situation. Medical decisions will need to be made concerning their care.
  3. The chronic phase - between the diagnosis and the result from the treatments during which the patient juggles everyday life with medical treatment. This can last for months.
  4. The recovery phase - occurs when final acceptance of their condition is realised. This does not always mean remission, but the ability to cope with the mental, social, physical, religious and financial effects of their illness.
  5. The terminal (final) phase - this occurs when death appears as very likely. The focus now moves from attempting to cure the illness to providing palliative care.
The diagnosis of a terminal illness is a life-changing event, not only for the patient but for the patient's family as well, and can trigger feelings of depression.
Diagnosis
The diagnosis of a terminal illness is a life-changing event, not only for the patient but for the patient's family as well, and can trigger feelings of depression, in both patient and loved one. These feelings can be severe or mild and can often be just one of the stages that a person goes through when learning of catastrophic news.

It is good to talk about the diagnosis with family and friends and then to carry on life with as much normalcy as possible. This continuation of routine is reassuring for all as it keeps things in perspective and allows the person to adjust to the changes.

For many who receive a fatal diagnosis, they are still only feeling a little unwell at the diagnosis stage and this news can throw them. For people learning that they are going to die, in the foreseeable future, it can be a time of facing one's mortality.

Most of us never really think of death in any real way until it faces us, either through the death of a loved one, or in this case, where one is staring down the barrel of a fatal diagnosis.
Many people are scared of death and dying and do not know what to expect.

Many people are scared of death and dying and do not know what to expect. It is a really good idea to talk to professionals, either medical or spiritual, to gain a better understanding about what to expect. Remember these people face death all the time and can give the best advice.

As one dying patient said shortly before her death, "dying is one of the hardest things I have done." (3)

Hard yes, but not impossible once the initial shock and grieving period is complete. For many of those with a finite time to live, the remaining months can be a valuable time for completing unfinished business, righting past wrongs and really living for the moment.

However in severe cases, the news, if not properly dealt with, in a caring and supportive manner, can lead to intense feelings of depression and even thoughts of suicide.
Terminally ill patients who seek suicide do so, not because of their terminal illness, but because they are suffering from depression


Depression
Studies have shown that those terminally ill patients who seek suicide do so not because of their terminal illness but because they are suffering from depression.

A study of terminally ill patients, published in the American Journal of Psychiatry, in 1986 found:

"The striking feature of (our) results is that all the patients, who had either desired premature death or contemplated suicide, were judged to be suffering from clinical depressive illness; that is, none of those patients, who did not have clinical depression, had thoughts of suicide or wished that death would come early." (4)

More alarming statistics from an article in USA today show that older people suffering from terminal illness who attempt suicide are as high as 90 percent.(5)

Positive Results of Treatment
While this depression may be related to the terminal illness, the depression unlike the illness is able to be treated successfully in many cases.
"Effective psycho- therapeutic treatment is possible with the terminally ill, and only irrational prejudices prevent the greater resort to such measures."


Psychologist Joseph Richman former President of the American Association of Suicidology states: "Effective psycho-therapeutic treatment is possible with the terminally ill, and only irrational prejudices prevent the greater resort to such measures." (6)

Not only do studies show that patients respond to therapy, they also show an improved quality of life as well as a loss of the desire to hurry towards death, by unnatural means.


Treatment
The onus is on doctors then to provide correct treatment for terminally ill patients who are suffering from depression. They can do this firstly by making the correct diagnosis - depression, then by prescribing antidepressant medications and by arranging counselling for their patients.

How Caregivers Can Help
  • You are just as needy as your patient, so find a person that you can trust and unburden all your fears and anxieties on them. It is good to you to talk and to sort out your feelings. You will need to get yourself sorted out before you can be of any real help to your loved one.
  • There are going to be many sharp turns and twists in the days ahead and it helps to know that someone is there listening. Even just being there to listen to the doubts and fears can be a sign of support. Be patient with your charge, even if you've heard something once, twice or three times before your support is invaluable.
  • Draw on your patient's previous tough experiences as an example for how to cope with this new situation.
  • Be prepared. Learn as much as you can about your charge's condition. Coming to terms with the emotional upheaval may be enough of a learning curve for your charge so it's up to you to learn about the condition. Anything you can learn may will help your charge at somewhere along the way.
  • Let the ill person take the lead as much as they are able. Be there to support and encourage them. Helping them to be pro-active in a positive way will foster independence and a sense of achievement.
Stages of Grieving

The stages a person goes through, when diagnosed with a terminal illness, will generally follow the pattern established by psychiatrist Elisabeth Kubler-Ross in Stages for Receiving Catastrophic News in her book 'On Death and Dying', Macmillan Publishing, 1969.
How a person reacts, to a diagnosis of terminal illness, depends on the individual and the severity of the news.


While these stages are universal not everyone will encounter them the same way. Some people will go through all stages in order while others will go through one or two stages many times before moving on to the next stage. How a person reacts depends on the individual and the severity of the news.

For instance, if a person were to die on the first week in a new job we would still go through the same stages but in a matter of minutes (becuse bonding had not been established). In the case of a terminal diagnosis the same process may take weeks or months even.

Sometimes a phase can be triggered by an emotional discovery. An old holiday photo for instance may trigger a memory of a happier time and cause a person to go back to the angry phase when they are again forced to realise things will never be as they once were.

Denial
It helps to talk with a trusted friend about those hard to accommodate feelings.
This is a blocking out mechanism employed as a buffer to the shock of the immediacy of bad news. It dulls the pain during which time the reality of the situation begins to filter through to the conscious mind. There is an feeling of being 'out of it'. Everything seems unreal. As the knowledge of the situation becomes clearer, there is a sense of shock with accompanying symptoms.

It helps to talk with a trusted friend about those hard to accommodate feelings. This will take some of the edge off the intense emotions and help movement towards the next phase.

Anger
As a person becomes aware, that they have a shield around them, they begin to deconstruct it slowly. They are then forced to confront the knowledge that is beyond their emotional control. The pain and reality hit hard and this is when this phase starts. A person simply is never ready to hear news this hard.

Anger is a way of deflecting emotional turmoil away from a vulnerable core. One of the easiest emotions to tap into, it can be directed at anyone, the doctor, strangers, friends, family members or even God. Feelings of guilt and fear are also common at this time.

It is good sometimes for counselling to take place at this time as this can help lift the burden.
This [bargaining] is what happens when a person realises their anger is not getting them anywhere and they will try any means in their power to halt the inevitable.


Bargaining
This is what happens when a person realises their anger is not getting them anywhere, and they will try any means in their power to halt the inevitable. It is a method of trying to gain control over a situation in which they feel powerless. This can involve making deals with God, the Universe - whatever. A weaker line of defence it still has the power to protect a person from the painful reality of a terminal diagnosis.

Depression
One of the reactions of the unexpected emotional devastation that a terminal diagnosis can bring. A person looks at the possible scenarios and will dwell on negative outcomes for a time. Feelings can include intense sadness, hopeless, emptiness, helplessness and exhaustion.

A way of coping through this stage is to get things in order, this is a time when their will be many practical tasks that will need attention. Focusing of these necessary tasks will stop the feelings of gloom and doom welling up and will also lessen the feelings of anxiety knowing that things are well sorted.

Acceptance
New feelings of hope and peace can grow provided the person is given the support, love and acceptance they need.
The stage where it all finally sinks in and the knowledge is stabilised into a new lifestyle. New feelings of hope and peace can grow provided the person is given the support, love and acceptance they need.

Families can help their loved ones reach this phase by giving them as much reassurance as they can. Instead of changing routines it is important to keep things as normal as possible for as long as possible. Family members should not turn into grinning puppets, there is nothing more disconcerting for a dying person than to be surrounded by insincere emotion.

Keep family traditions and rituals alive, and celebrate the gift of life as much as you are able.

Suicide
Suicide is often an option considered by those with a terminal illness who are severely depressed. Hearing their condition is fatal can trigger old depressive conditions and even generate new ones.

For these patients suicide can seem the only way out, however new studies show treatment for the depression can prove invaluable and even improve the mental and emotional health of a person with a terminal illness.
Many people who consider suicide feel it is an option that will remove the 'burden' they feel they are becoming to their family.


However with some people's growing awareness of euthanasia and physician assisted suicide, suicide is rapidly becoming thought of as an acceptable alternative. Some do not even look beyond the immediate convenience of such an option. Many people who consider suicide feel it is an option that will remove the 'burden' they feel they are becoming to their family.

In 1995 a journal entitled Suicide and Life-Threatening Behaviour concluded that suicide is a logical option for those with hopeless conditions. Terminal Illnesses were lumped in together under the term hopeless conditions which also included:

"severe physical and/psychological pain, physically or mentally debilitating and/or deteriorating conditions, or quality of life no longer acceptable to the individuals." (7)

Dr Broudewijn Chabot, a Dutch psychiatrist who has provided fatal drugs to depressed patients, has claimed that "persistently suicidal patients are, indeed, terminal." (8)
The 'effecting of closure' can have enormous benefits, not only for the patient but for family and friends...

The administering of fatal drugs however denies patients the process of reflecting on their lives, putting their affairs in order and generally coming to terms with their human condition. This 'effecting of closure' can have enormous benefits, not only for the patient but for family and friends as it can help with the grieving process later on.

Psychiatrist, Dr Kubler-Ross, who outlined the stages of grieving and has worked with thousands of families, over many years, feels suicide is wrong for patients with terminal illness.

"Lots of my dying patients say they grow in bounds and leaps, and finish all the unfinished business. [But] assisting a suicide is cheating them of these lessons, like taking a student out of school before final exams. That's not love, it's projecting your own unfinished business." (9)

Refusal of Treatment
Section 11 of the New Zealand Bill of Rights Act 1990 states that everyone has the right to refuse to undergo any medical treatment.

The Code of Health and Disability Consumers Rights 1996 Right (7) states that every consumer has the right to refuse services and to withdraw consent to services. The right to refuse medical treatment under the Bill of Rights Act and the above Code is limited to people who are competent to refuse consent.
The right to refuse medical treatment under the Bill of Rights Act and the above Code is limited to people who are competent to refuse consent.


This enables a patient to refuse any treatment which is likely to be found burdensome. Doctors can withdraw treatment for the same reasons. This however does not mean that doctors can refuse to administer palliative and or therapeutic treatment for those same patients.

Unbearable Pain
Otherwise known as 'unacceptable suffering', this involves pain and suffering that is persistent, unbearable and hopeless.

In a study of end of life issues regarding terminal patients most stated receiving adequate pain and symptom management was a major concern. They claimed that an undermining of care in this area could lead to thoughts of suicide. (10)

However these definitions, when used in a legal framework, present problems of definition as they are subjective. This terminology can also refer to non-medical conditions which if used as a standard for medical practice can lead to a danger of fallibility.

Drugs
Drugs are given to relieve pain , and in some cases are given in increasing quantities to the extent where they have a negative impact on the patient's general health.
rugs, such as morphine, are often administered to relieve unbearable pain in terminally ill patients and in some cases are given in increasing quantities to the extent where they have a negative impact on the patient's general health. This is acceptable within the current framework, provided that the drugs are prescribed to alleviate suffering and not to hasten death. Shortening of life is often a side effect of such treatment, however.

There are reports where increasing amounts of morphine, have been administered with the purpose of causing death. This is known as euthanasia by instalment.

Botox is found to be more effective that morphine.

Proper Treatment of Pain
For many patients, improper treatment of pain is a great fear in terminal illness. There is a lot of pain associated with terminal cancer, for instance and patients do not want their last days to be filled with unbearable pain and trauma.
"A young woman referred to our service with metastatic breast cancer indicated a wish to die. It soon became apparent that her wish to see her life end stemmed directly from her as yet poorly controlled pain."


Case Study
This case study of a patient of Doctors, Chochinov and Schwartz, illustrates this point.

"A young woman referred to our service with metastatic breast cancer indicated a wish to die. It soon became apparent that her wish to see her life end stemmed directly from her as yet poorly controlled pain. Once good pain relief was achieved, she was able to live out her final days on her family's ranch near the horses she loved." (11)

Hospice
Certain forms of treatment then have proved to work effectively on those with terminal illnesses but the most important aspect of care for this group is ongoing care. The hospice movement has provided facilities that are successful in the relief of pain and other distressing symptoms as well as psychological support for patients and their families.

Cicely Saunders, who was instrumental in establishing the movement in the early sixties, claims that:
The growth of the hospice movement in recent years and the following increase of quality end of life exper
ience has lead to a change in perception of terminal illness and palliative care.

"Hospice is a complex set of attitudes and skills, not a building. Much of this care and treatment can be accomplished at home with the support of teams... this in itself has meant that few, if any, patients or families raise the possibility of physician-assisted suicide." (12)

The growth of the hospice movement in recent years and the following increase of quality end of life experience has lead to a change in perception of terminal illness and palliative care. Workers in the hospice system are strongly opposed to euthanasia as the two concepts are mutually exclusive.

Research shows that the satisfactory control of pain is achievable with the majority of patients in the hospice setting.

"A repeated figure for satisfactory pain control is in 97% of cases in the hospice setting and 90% of cases in domestic care." (13)

Case Study
"My cancer was diagnosed in November 1979 and my health deteriorated rapidly thereafter. By January of this year I was bedbound by pain and weakness, having been able to drink only water for six weeks. My wife had been told by our family doctor that I 'would die a painful death within three months.'

I felt desperate, isolated and frightened and at that time I truly wished that euthanasia could have been administered. I now know that only my death is inevitable and since coming under the care of the Macmillan Service, my pain has been relieved completely, my ability to enjoy life restored and my fears of an agonising end, allayed. As you can see, I'm still alive today.

My weight and strength have increased since treatment made it possible to eat normally and I feel that I'm living a full life, worth living. My wife and I have come to accept that I'm dying and we can now discuss it openly between ourselves and with the staff of the Macmillan Service which does much to ease our anxieties.
My experiences have served to convince me that euthanasia, even if voluntary, is fundamentally wrong and I'm now staunchly against it on religious, moral, intellectual and spiritual grounds.


My experiences have served to convince me that euthanasia, even if voluntary, is fundamentally wrong and I'm now staunchly against it on religious, moral, intellectual and spiritual grounds. My wife's views have changed similarly. I'm no longer in such misery that her love for me would make her want me to be dead. And after I've gone, she will not have to fear the burden of guilt which would have been upon her had she wished for my early death." (14)

Burden on Families
Patients with terminal illnesses are reluctant to be seen as a 'burden' on their loved ones. With today's rising health costs and the busy lifestyles, many lead just to stay afloat financially, those people with a terminal illness can feel they will be draining their family's resources. This can lead to feelings of guilt for staying alive until their condition works itself through to its ultimate conclusion.

Burden on Society
These feelings of being an unproductive drain of society's medical and financial resources are being amplified by society in general. Increasing publicityis being given to groups who claim futile care is a waste. 

Suicide is increasingly being promoted as an acceptable option and this will affect individuals coming into contact with this opinion who may then feel they have a 'duty to die.'

In 1991, a survey, conducted by the Boston Globe, showed that the main reason people with an "incurable illness who suffered a great deal of physical pain" would consider ending their lives was because they "don't want to be a burden" to their families. They were not primarily concerned with the pain or even the restricted lifestyle. (15)
In the Netherlands the eligibility for euthanasia is altering all the time so it is predicted that, in the near future, assisted suicide will be available for those elderly people who are not sick but merely sick of life.


This growing concern of maintenance of resources over life can lead to a radical shift in the nature of society's moral structure. In the Netherlands the eligibility for euthanasia is altering all the time so it is predicted that, in the near future, assisted suicide will be available for those elderly people who are not sick but merely sick of life.

Els Borst, Dutch Minister of Justice, stated: "I am not against it if it can be carefully controlled so that only those people of advanced age who are tired of life can use it." (16)

While hospice care is advocated world-wide as a an acceptable alternative to euthanasia, it is not readily available around the globe, possibly due to economic factors.

References 
(1) Eric Gargett, "Changing the Law in South Australia," World Right-to-Die Newsletter, May 2001, p. 3. (The World Right-to-Die Newsletter is a publication of the World Federation of Right to Die Societies.) 
(2) "'Dr. Death:' No law is needed on euthanasia," USA Today, October 28, 1992, p. 6A. Kevorkian's attorney, Geoffrey Feiger said, "Any disease that curtails life-span is terminal." Geoffrey Fieger, Letter to the Editor, Detroit Free Press, December 11, 1990.
(3) Hensley S.D. and Hensley E., "Depression in the Elderly with Emphasis on Terminal Illness" The Centre for Bioethics and Human Dignity Website
(4)Brown, J.H., Hentlleleff, P. Barakat P. and Rowe C. "Is It Normal for Terminally Ill Patients to Desire Death?" American Journal of Psychiatry. Vol143, No2 (Feb 86) p 210.
(5)USA Today, August 9, 1993, 2nd Editorial Page. 
(6) Richman R., Letter to the Editor "The Case agaisnt Rational Suicide" Suicide and Life Threatening Behaviour, Vol. 18, No 3 (Fall 1988)p288
(7) James L. Werth and Debra C. Cobia, "Empirically Based Criteria for Rational Suicide: A Survey of Psychotherapists," 25 Suicide and Life Threatening Behavior, (1995), p. 238. 
(8)"CQ Interview: Arlene Judith Klotzko and Dr. Boudewijn Chabot Discuss Assisted Suicide in the Absence of Somatic Illness," 4 Cambridge Quarterly of Healthcare Ethics (1995), p. 243. 
(9) Millier L., "Kubler-Ross, Loving Life, Easing Death" USA Today, Monday, Nov 30, 1992 p6.
(10) Chochinov M.D. and Schwartz L. "Depression and the Will to Live in the Psychological Landscape of Terminally Ill Patients" From The Case Against Assisted Suicide Ed Foely and Hendin- John Hopkins. p270
(11) Ibid.
(12) Saunders C. "A Hospice Perspective" From The Case Against Assisted Suicide Ed Foely and Hendin- John Hopkins. p287
(13) Gormally L., "Submission to the Select Committee of the House of Lords on Medical Ethics by the Linacre Centre for Health Care Ethics." Euthanasia, Clinical Practice and the Law p159
(14) Cohen S. in Macmillan Service, 5th Report (London:St Joseph's Hospice) 1980, p5
(15) Knox, R.A., "Poll: Americans Favour Mercy Killing" Boston Sunday Globe, Nov 3, 1991 p22
(16) Margaret Oostvenn, "Ik kan me goed voorstellen dat artsen stervenshulp niet melden," NRC Handelsblad, April 1, 2001. (http://www.nrc.nl/2001/04/14/Vp/01a.html) accessed 4/16/01.