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Aggressive Cure Treatment (Hospital) OR Aggressive Comfort Treatment (Palliative)

 

        Death is a painful topic. It is a taboo subject. Death is the great unmentionable. It is felt to be bad form to mention it. Death is not a happy subject to discuss. People avoid talking about it. People don’t want to come near to the face of death. Some are superstitious about it. They fear unconsciously that talking about it will bring about their early death. But every one who is born will definitely die. There is a 100% certainty in death. No one can escape from it. Yet very little is taught on the topic. Why? Maggie Callanan said that her dying father had once asked her: “There are classes in parenting, financial planning, maintaining your house, building a deck. Why aren’t there how-to classes in dying? Why don’t we talk about death? I don’t know how to do this! He looked deep into my eyes. “I want to do it right. How can I be a good example to all of you in my dying? I have tried to live my life right, and now I want to die right!” (Final Journeys: a Practical Guide for Bringing Care and Comfort at the End of Life, p.1)

 

        Death can come at any moment. Every one is only a hair breath away from major illnesses or accidents. That means that the prospect of being terminally ill2 is just round the corner. Dying is a reality that no one can escape. Yes, some people are not afraid of death but most are afraid of dying. What am I terrified about dying? I am afraid of:

         I do not want to be at the mercy of my own ignorance. I want to be in a position where I can be in charge of what I can do should I be terminally ill. What can I do about the situation? I know that fear and ignorance is a potentially disastrous combination but knowledge empowers. I am also aware that Americans make it a point to share their experiences. So, I decided to buy books to keep myself informed. Now that I have a Kindle Touch, I just click to buy the books that I want. In order to build up my confidence on the topic of dying, I have read, for the last two months, the 25 books listed in the appendix 1 below. I would strongly recommend the first five books.

 

        From what I read, there are basically two scenarios when one is terminally ill. One is to go for an aggressive cure treatment and to find a cure for one’s illness. The other is to accept the Specialist doctors’ views that there is no cure and that from their experience they are of the view that one has about 6 months to live in USA context. In such a situation there is an option to go for palliative care or aggressive comfort treatment rather than remain under aggressive cure treatment. After 6 months of comfort treatment, if one’s health improves, one can seek a cure treatment again in USA context.

 

Aggressive Cure Treatment (Hospital)  

What is aggressive cure treatment? It means to take extreme measures to keep the patient alive, even if the quality of life is severely impaired. From what I read, I have the impression that if a person is brought to the hospital, the doctors are duty bound to aggressively treat the person to cure him. Even for a terminally ill patient without advance medical directive, the doctors are required to aggressively treat and cure his illness, by subjecting him to:

Receiving CPR (cardiopulmonary resuscitation)

Receiving respirator ventilation

Receiving artificial hydration and nutrition

Receiving kidney dialysis

Receiving extraordinary life-sustaining treatment

Receiving invasive life-prolonging treatment

Receiving endless blood tests to find the cause of the illness

Receiving numerous X-rays

Receiving extra CT scans and MRI scans to be on the safe side

Receiving surgery

etc.

 

Doctors may be sued by the patient or family members if they do not aggressively treat the terminally ill patient in the hospitals. The legal system places the doctors and hospitals at more risk for doing too little than for doing too much. The incentive is to do more tests and extensive aggressive treatments.

 

In “The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life” Byock, MD, Ira stated:

“Any doctor who dreads talking to patients about dying— and that describes a large majority— quickly learns that ordering more tests and treatments allows him or her to refocus on the disease and sidestep in-depth discussions with patients and their families about these morbid (or mortal) subjects.” (p.237)

 

“In 1997 the Institute of Medicine published Approaching Death, a landmark report that surveyed all the available evidence pertinent to dying in America. Approaching Death cited widespread “errors of omission and commission” in end-of-life care. Studies found that pain was inconsistently assessed and often poorly treated. Communication around end-of-life planning and preferences often did not occur. Treatments were often given when there was little chance of success but every chance of increasing a patient’s distress. Reimbursement systems incentivized treating disease (“at all costs”), as did a legal system that placed physicians at more risk for doing too little than for doing too much. The Institute of Medicine described pervasive deficiencies in medical and nursing education. In its report the institute issued a call for dramatic improvements in clinicians’ training, as well as in health services and systems of care, and in community-based responses for people approaching death.” (p.229)

 

In “Final Journeys: a Practical Guide for Bring Care and Comfort at the End of Life” by Maggie Callanan, it states, “The 911 system is a state-mandated system established to save lives at whatever cost. Once 911 is called, you cannot, by law, stop or interrupt what they do— even in your own home. . . . .The safest way to avoid unwanted treatments, such as cardiopulmonary resuscitation or respirators, is not to call 911 to begin with. If you are a hospice patient, call hospice. They will send help and direct you what to do.” (p.318)

 

On Feeding Tube

        If a terminally ill person does not sign an AMD and have the financial resources, most hospital system would have little choice but to go ahead with feeding tube. But, keeping a tube in a terminally ill person's nose or directly into her stomach for no reason other than just artificially prolonging her life is a dehumanizing existence for the patient. This sort of feeding, in some cases, can go on for months or years. The most recent reported case in the newspapers is that of Terri Schiavo. She was an individual in a persistent vegetative state (PVS) for 15 years whose life was extended through the use of a feeding tube. She died on 31 April 2005. The main concern in this case was that her wishes were unknown and this spawned many debates about whether or not removing Terri’s feeding tube was ethically, morally, and legally “right.” (http://en.wikipedia.org/wiki/Terri_Schiavo_case, The Whole Terri Schiavo Story from the WorldNetDaily in http://www.wnd.com/2005/03/29516/  and The Lesson of Terri Schiavo in http://rossde.com/editorials/edtl_Schiavo.html)

Having read the above 3 write-ups plus others in the Internet, the lesson for me about Terri Schiavo case is that none of us should put our own family into a state where our family members may have to suffer because we did not sign an AMD ourselves through ignorance or non action. Family members will have great difficulty to decide—there will be some who are for keeping on feeding and some are for stopping the feeding after some time—when such cases of feeding tube occur. Thus, it is something to be discussed and thought through for all individuals to decide whether to sign an AMD or not, long before we are terminally ill (as defined in the Advance Medical Directive (AMD) Act of Singapore below).

My point is that how can any family member in Singapore be in a better position than the 5 specialist doctors (see below) to decide whether the patient is terminally ill and therefore does not want to continue with the tube feeding?

 

All of us are under the impression that when we are terminally ill, the primary treatment team in the hospital will be in the best position to advise us or to decide whether to continue with the feeding tube or to withdraw or withhold such treatment after some time. When the family member asks verbally, what do we expect the doctors to say? The more sympathetic doctor will say it will be best if you can get all your family members to come, the cautious doctor will say ‘I am cannot predict’ or something to that effect, the hurried doctor will just brush our question aside and we get a whole host of different answers. If the patient does not have a signed AMD, the family will be put into a position, after some time, of deciding whether to continue with the tube feeding or respirator or any aggressive cure treatment. The family members are not in a position to really know whether the patient is terminally ill or not. This is an unfair situation but a fact of the hospital system.

Thus, the only official way to obtain an expert professional certification as to whether the patient is terminally ill and thus does not want “Extraordinary life-sustaining treatment” or aggressive cure treatment is to go by the strictly by law and tell the hospital that the patient has signed and registered an AMD. The hospital will check with the Ministry of Health and must then initiate the following actions:

 

1. Three doctors, including the patient's hospital doctor must unanimously certify a patient's terminal illness. Two of the doctors must be specialists.

 

2. If the first panel of three doctors cannot agree unanimously that the patient is terminally ill, the doctor-in-charge will review his diagnosis. If he is still of the opinion that the patient is terminally ill, the matter will be referred to a second panel of three specialists, to be appointed by the Ministry of Health.

 

3. Can an AMD take effect if the second panel of doctors also cannot agree on the diagnosis?

 

No, the AMD cannot take effect if the second panel cannot agree unanimously that the patient is terminally ill. The patient's life will continue to be sustained and he will receive medical treatment as normal.

 

        Thus, it is vitally important that an individual must decide for himself/herself whether he/she wants to sign the AMD. Even if he/she has signed the AMD, he/she does not have to immediately send it to the Ministry of Health. He/she can send it any time. Assuming that the patient is unable to talk or write or in anyway indicate that he/she has signed and registered an AMD, the family members do not have to tell the hospital for whatever reasons until they feel that it is time to so.

 

        The expert hospice doctor, Dr Ira Byock, in his book “Dying Well,” have these comments on tube feeding:

 

“The family of a person who can no longer eat normally or communicate his desires often struggles with decisions about life- prolonging procedures such as surgery to place a tube for formula feeding. In deciding that a loved one will not be allowed to die of malnourishment, a family is making a tacit decision to let the person die of something else. Thus, the declaration by the daughter of an eighty-seven-year-old comatose patient, "I would never let Mom die of starvation," is a decision that Mom must, therefore, succumb to infection or stroke or seizure or blood clot or gastrointestinal hemorrhage. Each complication that is treated merely shifts the physiology of the person's dying, it does not halt it. A patient who is artificially fed and hydrated may live longer but is more likely to die with episodes of acute pain or breathlessness or, as in Michael's case, from a seizure.”(p.179-180)

 

“Q. Mom has never wanted to be hooked up to a feeding tube. But because of her Alzheimer's, she is eating less and has been losing weight.

A. It is important to begin by asking why she is not eating. Sometimes people with Alzheimer's disease or other dementias stop eating because their dentures no longer fit or they have a sore in their mouth or because they have a toothache that they are unable to tell anyone about.

With advanced dementia, however, people may reach a point when they are neurologically not capable of eating. If this is the case, before inserting a feeding tube, it is important to ask "What purpose will the feeding tube serve?" If the answer is "I won't allow Mom to die of starvation," the subsequent question might be "What would it be acceptable for her to die of?" These are the real issues. Too often, questions of this sort are not asked. Families go along with, or insist on, feeding tubes and, whenever there is a fever, IV antibiotics. After many months, a family member may voice anguish over the plight of their loved one who "just won't die." In truth, at the end of a long illness people often stop eating; this seems to be part of the "wisdom of the body," and is, undoubtedly, one of the most peaceful and comfortable ways of dying.

Remember that placing and using a feeding tube are medical procedures that should meet defined, achievable clinical goals. I suggest that if your mother's condition is advanced, and a medical evaluation (including an oral examination) does not resolve the problem, she should be assisted in eating. A speech or occupational therapist skilled in eating disorders can provide invaluable help. If she resides in a nursing home, and you are not directly involved in her physical care, arrange to observe her at mealtimes. Is she being helped with eating? Determine in your own mind if the encouragement and assistance she is receiving are sufficient. On the other hand, make sure such assistance is not overly aggressive and does not border on force-feeding. Talk to her doctor. Get a second opinion. Talk to the local hospice program for its perspective.” (p. 262-263)

 

“Q. Our mother had a stroke a year ago. She is comatose and on a feeding tube. She never wanted to be kept alive artificially, and my brother and I want the tube removed. Her doctor and nursing home are making us feel like we want to kill her. Would it be cruel to remove her tube?

A. No, it is not cruel; in some circumstances it may be the most merciful thing to do. Keeping a tube in a person's nose or directly into her stomach for no reason other than artificially prolonging her life can be senseless and inhumane. Are her hands restrained so that she does not reflexively pull at the tubes? Has she had pneumonias or other complications from the feedings? Is she more comfortable or less comfortable because of the feedings?

Dying of a progressive inability to eat is probably one of the most natural and physiologically gentle ways to expire. In the context of advanced illness, hunger is rarely, if ever, a source of discomfort. The same is true with thirst. Hospice patients who are dehydrated are regularly asked if they are thirsty; most answer no, but those who say yes are consistently and fully relieved by having their mouth and throat moistened. A recent study confirmed this experience. "Thirst," for people with advanced illness and dehydration, is a feeling of dryness, not the familiar sensation that can be quenched only by drinking substantial amounts of fluid. In any event, the discomfort associated with dehydration is easily prevented. Most important is your resolve to ask what is really right for your mother. Given that her death from this stroke is inevitable, think about how it might occur in a way that would honor and celebrate her. If tube feedings are stopped, the time remaining should be one of heightened care and attention. Think about simple rituals to mark this passage that would have meaning for her. Keeping a candle burning in her room or bringing a group of her friends and family together to read to her or sing to her-or simply to hold vigil-can be tangible ways of honoring her. The possibilities are limited only by your imagination.” (p. 266-267)

 

  

Aggressive Comfort Treatment (Hospice)

What is hospice and palliative treatment? The very words “hospice” and “palliative care” tend to scare people. These terms carry fearful symbolic power. Some people are even superstitious about the name. Many people think accepting hospice— and by extension palliative care— means you have to give up on living and embrace your dying. Hospice is associated in people’s minds with dying. This is a misconception. Why? Because when a person signed an AMD, he has indicated, “full understanding of the palliative rather than the curative nature of hospice care as it relates to the individual’s terminal illness.”

But, with palliative care, length and quality of life are not at odds; indeed, being comfortable is considered a key to living longer. By relieving his pain and adjusting his medications so that his appetite came back, he often regains his will to live. Although the evidence continues to build, it is still a surprise to many people that hospice and palliative care help patients to live longer.

 

In “The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life,” Byock, MD, Ira stated in mid January 2007:

“Reed Abelson, a health reporter for the New York Times, had interviewed me for a story she was writing about the growth of specialized palliative care teams in leading American hospitals. Hospital-based palliative care was still quite new. Palliative care had grown out of hospice care in the United States and the medical component, palliative medicine, had formally earned status as a subspecialty in September 2006. Reed had asked how our program receives referrals, how receptive other doctors are to the palliative care team being involved, and whether willingness to consult us varies among specialties. I filled her in on the ways our team was becoming increasingly integrated within expanded multi-specialty health care teams treating people with serious cancers, heart disease, and liver disease, as well as people with multi-system organ failure in the ICUs.” (p.97-98)

 

 “After all,” I asserted, “although we work in hospice and palliative care, we are doctors and nurses. We are not specialists in dying as much as specialists in taking care of people who are seriously ill and may die. In taking good care of people with advanced diseases— making sure they are physically comfortable, eating and drinking, ‘pooping and peeing,’ sleeping and getting around as well as possible— it is not all that surprising that they live a bit longer.” (p.99)

 

“I explained that hospice is the most comprehensive program of care for people who were facing the end of life— and for their families. I explained that a nurse who specialized in hospice care would be assigned to them and while they would see that nurse most frequently, hospice care entailed a team— very much like our palliative care team, which they had come to know— with a physician, chaplain, social worker, and even volunteer visitors. Any or all of these components of the team at some point might be of help. Additionally, a physical therapist from hospice could see him at home and teach them both ways of keeping him active, exercising, and safe. Importantly, a hospice nurse would be available by phone and able, if needed, to make an urgent home visit any time of the day or night. A hospice physician was always on call and available in an emergency. Accepting hospice care meant that anticancer treatments would not be part of the plan. This is often a sticking point for patients.” (p.103)

 

“In fact, a formal ethical principle and precept of palliative care holds that the practice of palliative care does not intentionally hasten death. While not purposefully political, this tenet has deliberate cultural significance and, therefore, inevitable political implications. The founders of the discipline understood that the key distinction— between letting terminally ill people die and intentionally ending their liveswas essential to maintain public trust in the doctors and nurses who work in hospice and palliative care. The wisdom of explicitly distinguishing caring for people from causing people’s death is evident in our present times. Today, distrust of doctors is at an all-time high and some accuse hospice and palliative care clinicians of promoting a “culture of death” when we allow dying people to leave this life gently, without subjecting them to CPR or mechanical ventilation or dialysis or medical nutrition.” (p.280)

 

“There was another perspective that I wanted to offer. “Paul, for what it is worth, when people have been fighting cancer for a long time, as you have, there often comes a point at which they may live longer if they decide to live with their cancer rather than continue to fight against their cancer. What I mean is that if a person is tired and run-down, more chemotherapy may not be in his or her best interests and may actually shorten the person’s life. “Oncologists tend to start with the most effective chemotherapy they have for a patient’s cancer. Second-, third-, and fourth-line treatments may be less effective or carry more side effects. When cancer grows despite chemotherapy or when it recurs, the situation may become one of diminishing returns on a person’s investment of limited time and energy. Since most chemotherapy affects normal cells as well as cancer cells, these medications can take a toll on one’s general health— something I know you know all too well.” “I know this in my head, Dr. Byock,” Paul said, “but when I get home, on the days I feel better, it drives me crazy that I am not doing something to try to live longer.” These are feelings I commonly hear people express. “I hear you, Paul,” I replied, “but please consider that what you need most— certainly right now, and possibly in the weeks ahead— is to concentrate on getting the best nutrition you can, and both rest and exercise when you are able. People are more than their organ systems. Being comfortable and emotionally well within yourself is also important to your general health and to living longer. I believe that is why studies have shown that people who receive hospice care actually tend to live longer than people who don’t.” In Paul’s situation it worked. With intensive supportive care he lived to attend and enjoy his daughter’s wedding and a few months more.” (112-114)

 

 

Before a patient can receive comfort or palliative treatment, he has to be certified by a doctor that he is terminally ill and that he is not likely to live beyond 6 months in USA. Lawmakers designed the hospice benefit with provisions for mandatory reevaluation and recertification every three months after the initial six months of hospice service. But after the 6 months of comfort treatment and when one is much better, there is no obstacle to go again for cure treatment

 

 

What Researches have shown:

In “The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life” Byock, MD, Ira stated:

A growing body of clinical research suggests that for people with advanced illness, improvements in quality of life go hand in hand with extending the length of life.

“At Dartmouth, a palliative care research team led by Dr. Marie Bakitas, whose doctorate is in nursing science, enrolled 322 patients with advanced cancer receiving standard oncology care. Patients gave permission to be assigned by chance to one of two groups. One group received phone-based visits with a nurse who inquired about their symptoms and provided education, coordination of care, and supportive counseling for living with their illness. The other group did not. The main focus of the study was to assess the effects of this simple, less comprehensive, and relatively inexpensive palliative intervention on people’s well-being and health care use. On average, people receiving this “low-dose” palliative intervention had significantly higher mood and self-reported quality of life, while there was no significant effect on symptom intensity (which was low in both groups) or on total health services used through the end of life. The study was not designed to investigate the impact on survival, yet it found that median length of life was 14 months in the intervention group and 8.5 months for those receiving standard oncology care. By the study’s completion at three years, similar numbers of patients in both groups had died.

“Convincing evidence of the capacity of palliative care to simultaneously improve quality and extend length of life came from a study by oncologist Dr. Jennifer Temel and associates at Massachusetts General Hospital. After giving their permission to participate in the study, 151 patients who had been recently diagnosed with incurable metastatic lung cancer were randomly assigned to receive cancer treatment with or without concurrent palliative care. This was team-based, “full-dose” palliative care of the sort that our team at Dartmouth provides. Patients receiving palliative care experienced substantially lower incidence of depression and higher quality of life on three standardized, multidimensional questionnaires. The most striking finding was that patients in the palliative care group lived a median of 11.6 months, compared to 8.9 months in the usual care group. A 2.7-month survival advantage might not seem dramatic, but this magnitude of therapeutic effect would be considered a major advance if it were attributable to a new chemotherapy treatment for people with late stages of lung, pancreas, breast, or colon cancer. In Dr. Temel’s study, patients in the intervention group were less likely to receive aggressive cancer treatments within two weeks of their death and more likely to receive hospice care at home.” (p.108-109)

 

“Each edition of the Dartmouth Atlas of Health Care has found that greater intensities of medical services correspond with higher costs, but not with longer survival or better health outcomes. Despite seeing more specialists, undergoing more tests, and having more treatments, people who have cancer, heart attacks, or fractured hips— and reside where high medical intensity is the norm— don’t live measurably better or longer than people in regions of lower medical intensity. In fact, in areas accustomed to more medical and surgical treatments for these conditions, patients have comparatively poorer functional outcomes and lower satisfaction with care. When it comes to the final years of their lives, people in higher-intensity regions and institutions spend more of their time in hospitals and ICUs and less of their time at home.” (p.234)

 

“For instance, I explained, we help a lot of people with advanced cancer to tolerate treatments that are effective against their tumors but have difficult side effects. In alleviating their symptoms and optimizing their ability to eat and drink, be active and rest, people with cancer are able to stay in the fight longer. If a time comes when chemotherapy and radiation prove more toxic than therapeutic, we can still help people live as well and as long as possible. Patients with late-stage cancers commonly find that when they are finally free of the side effects of treatment, they feel better and stronger. In living with, rather than relentlessly fighting their cancer, they ultimately live longer.” (p.99)

 

 

What is Advance Medical Directive (AMD)--See appendix 2 below

Medical science has advanced to an extent that it can sustain terminally ill person for months but with virtually no quality of life. In order not to be exposed to the battery of unnecessary tests and any extraordinary life-sustaining treatment, it is best to sign the AMD early. In fact, Dr. Ira Byock recommended: “I advise every adult to have an advance directive. The earlier in the illness journey it is completed, the better.”

 

Some of Dr. Ira Byock views are:

“There is no ethical, physiologic, or pharmacologic reason today for any person to die in agony. On the contrary, allowing someone to die suffering is medically and ethically wrong.”

 

“There are no clinical or ethical restrictions to alleviating pain when someone is dying. We will encounter people whose lives we cannot save— diseases we cannot cure and injuries too grave to repair— but we can always make dying people more comfortable. As the priorities of a patient’s care shifts from quantity of life to quality of life, comfort becomes paramount. When someone is dying, any concerns about long-term side effects of medications or addiction to narcotic pain relievers are unwarranted.”

 

“Alleviating suffering and eliminating the sufferer are very different acts. Acting with the intention of shortening a person’s life is killing”

 

“If they are of sound mind— meaning have ‘decision-making capacity’— people can refuse antibiotics for pneumonia or urinary sepsis, so-called ‘feeding tubes,’ or even insulin if they are diabetic, knowing full well that they will die without treatment.”

 

 

How do I want to die?

          It is important to think through what I consider to be the best case and the worst case scenarios of how I want to die and what I am willing to do, to die the way I want to die. The answers will change with time. They are never static. That’s OK.

 

Situation

Best Case

Worst Case

Where to die

Home, Hospice

Hospital, Nursing home, Old-folks home

When to die

Asleep, At night, In peace

Senseless and struggling

How to die when terminally ill

Let nature takes it's course

Tube feeding, IV, Intubated, Respirator, Catheters.

How to face death

 

Fearlessly and even beautifully.

Terror and fear

What type of death

Short sickness

Terminally ill, Violent

Whom to be beside

Loved Ones

Strangers, Doctors, Nurses

What Kind of Death

Calm and gentle death

Violent and random death

Physical Condition

 

No Pain

Lingering, Suffering, In Constant Pain

Spiritual Condition

Right with God. Hopeful

Have not made peace with God. Hopeless

Emotional Condition

Putting Relationship Right with People, having said:

Please forgive me

I forgive you

Thank you

I love you

 

Unfinished business with Relationship

Psychological Condition

Peaceful, Serene

Fearful, Depressed

Months before Death

Still walking and talking, eating and sleeping well

On Wheel-chair, Bed-ridden, sleeplessness, Not eating, unable to talk

Message after Death

Inspiration to someone

Quarrel amongst family members

Ultimate meaning for death and life

Love and Relationship

Selfish— self first, last and always, even on death

Action

 

Registered AMD

Hospital system takes charge. No AMD

 

 

Summary of what I have read

        If you interested to read articles of what I have read and are interested on the subjects of “Care and Care-giving” and “Death and Dying,” and "Grief and Grieving" please go to my website www.jameslau88.com.

 

 

                        ------------------------------------

 

Appendix 1

 

1.    Final Journeys: A Practical Guide for Bringing Care and Comfort at the End of Life by Callanan, Maggie

2.    The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life By: MD, Ira Byock

3.    Final Gifts by Maggie Callanan and Patricia Kelley (Feb 14, 2012)

4.    The Four Things that Matter Most by Ira Byock MD

5.    Dying Well by Ira Byock MD (Mar 1, 1998)

6.    Leaving This Life with Hospice: Stories of Wonder and Hope by Margaret Ledger

7.    Life Lessons by Kubler-Ross, Elisabeth, Kessler, David

8.    On Grief and Grieving by Kubler-Ross, Elisabeth, Kessler, David

9.    Good Grief by Granger E. Westberg

10.                       The Needs of the Dying by David Kessler

11.                       Counting on Kindness: The Dilemmas of Dependency by Wendy Lustbader

12.                       Wish I Knew: Caring for the Sick at Home by Susie Kong and  Tisa Ng

13.                       More than a Parting Prayer---Lessons in Care-giving for the Dying by William H. Griffith

14.                       Death Angel: The Journey of a Hospice Chaplain by Deborah Woods (May 17, 2007)

15.                       Peaceful Journey A Hospice Chaplain's Guide to End of Life by Matthew P. Binkewicz (July 1, 2005)

16.                       Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death” by Joan Halifax.

17.                       Don’t Waste the Pain by David Lyons and Linda Lyons Richardson

18.                       The Journey Home, Stories of Compassion and Inspiration from AseraCare Hospice by John Ross, K.T. Anders and Dr. James Avery (Oct 20, 2010)

19.                       Seven Days of Hospice: A Memoir by D.M. Wilmes (Nov 21, 2007)

20.                       In Mother Teresa's House by Rosemary Dew (Oct 9, 2010)

21.                       When God & Cancer Meet by Lynn Eib (Jul 2002)

22.                       Preparing for Death: The Science of Dying by Adams, C.W.

23.                       Patience, My Foot! by Michael LeFan

24.                       Path Through Grief by Helen Jaeger

25.                       O Love That Will Not Let Me Go edited by Nancy Guthrie

 

 

Appendix 2---Advance Medical Directive, Singapore

Advance Medical Directive Act

Introduction to AMD Act

An Advance Medical Directive (AMD) is a legal document that you sign in advance to inform the doctor treating you (in the event you become terminally ill and unconscious) that you do not want any extraordinary life-sustaining treatment 1 to be used to prolong your life.

Making an AMD is a voluntary decision. It is entirely up to you whether you wish to make one. In fact, it is a criminal offence for any person to force you to make one against your will.

New advances in medical knowledge and technology create new choices for both patients and health care providers. Some of these choices raise new ethical and legal issues.

One issue is that modern medical technology can technically prolong life in the final stages of a terminal illness2. However, it cannot stop the dying process. In such situations, further medical intervention would be medically ineffective, and a decision has to be made whether to withdraw such futile medical intervention. Some terminally ill persons who are unable to express their wishes at that time, may want to be spared further suffering and be allowed to die naturally, in peace and with dignity.

The law in Singapore allows Singaporeans who wish to make an advance medical directive to do so. The AMD Act was passed in Parliament in May 1996.

Advance Medical Directive (AMD) Act

1 "Extraordinary life-sustaining treatment" is any medical treatment which serves only to prolong the process of dying for terminally ill patients but does not cure the illness. An example is the respirator that is connected to a patient to assist him/her to breathe. It serves only to artificially prolong the life of a terminally ill patient.

2 "Terminal illness" is defined in the Act as an incurable condition caused by injury or disease from which there is no reasonable prospect of a temporary or permanent recovery. For such a condition, death is imminent even if extraordinary life-sustaining measures were used. These measures would only serve to postpone the moment of death for the patient.

 

Keys FAQs for Advance Medical Directive (AMD) http://www.pqms.moh.gov.sg/apps/fcd_faqmain.aspx    

Click on this link and type AMD in the Search section. You will obtain 31 Q & A but I have only highlighted 14 of them plus the link for the AMD form below.

Who can certify that a person is terminally ill?

 

Three doctors, including the patient's hospital doctor must unanimously certify a patient's terminal illness. Two of the doctors must be specialists.

 

What happens if the panel of doctors cannot reach a unanimous decision?

 

If the first panel of three doctors cannot agree unanimously that the patient is terminally ill, the doctor-in-charge will review his diagnosis. If he is still of the opinion that the patient is terminally ill, the matter will be referred to a second panel of three specialists, to be appointed by the Ministry of Health.

 

Can an AMD take effect if the second panel of doctors also cannot agree on the diagnosis?

 

No, the AMD cannot take effect if the second panel cannot agree unanimously that the patient is terminally ill. The patient's life will continue to be sustained and he will receive medical treatment as normal

 

What safeguards are there to ensure that I am given all necessary treatment before the AMD is carried out?

 

It is the professional responsibility of every doctor to ensure that all necessary treatment be given as long as the patient is not certified terminally ill and there is a possibility of recovery. Even if the patient is considered terminally ill, the doctor has the responsibility to provide treatment to minimise pain and suffering.

This is the current practice, and will continue whether or not the patient has made an AMD

If a patient who has made an AMD suffers from terminal illness, will he/she be left without medical treatment or left to starve?

 

Doctors will continue to provide care (i.e. treat and relieve pain and suffering of a patient with terminal illness).

Even if the AMD has taken effect, palliative care and medication will continue to be provided.

 

What is palliative care?

 

Palliative care helps to improve the quality of life of patients with terminal illness and their family members through prevention, assessment, and treatment of pain and other physical, psychological and spiritual problems.

The AMD Act specifies that palliative care includes:

·         provision of reasonable medical procedures for the relief of pain, suffering or discomfort; and

·         reasonable provision of food and water.

 

What is meant by "extraordinary life-sustaining treatment"?

 

"Extraordinary life-sustaining treatment" is any medical treatment which serves only to prolong the process of dying for terminally ill patients but does not cure the illness.

An example is the respirator that is connected to a patient to assist him/her to breathe. It serves only to artificially prolong the life of a terminally ill patient.

What is meant by "terminal illness"?

 

"Terminal illness" is defined in the Act as an incurable condition caused by injury or disease from which there is no reasonable prospect of a temporary or permanent recovery. For such a condition, death is imminent even if extraordinary life-sustaining measures were used. These measures would only serve to postpone the moment of death for the patient.

 

If I change my mind about an AMD which I have made earlier, can I revoke it?

 

An AMD can be revoked at any time in the presence of at least one witness. The person making the revocation should do so by filling in Form 3, which is the standard form for revocation of an AMD.  (Those who have made an AMD will receive Form 3 together with Form 2, which confirms that their AMD has been registered by the Registry of AMDs)

 

Alternatively, the person or his witness could write a simple letter to the Registrar of AMD.

 

The letter should contain the following information:

1.         the name and NRIC of both the person revoking the AMD and the witness, along with their addresses and home and office telephone numbers

2.         time, date and place where the revocation was made

3.         if the letter is written by the witness, the method of communication which the person used to communicate his intention to revoke the AMD (e.g. orally, sign language).  The witness should also state the reason why the person revoking the AMD could not do so himself.

Revocations should be sent to the Registry of AMDs as soon as possible.

What if my condition is such that I am unable to write?

In this situation, an AMD can be revoked orally or in any other way in which you can communicate. It is then the responsibility of the witness to the revocation to submit the notice of revocation using Form 3 or the letter as described above. The witness should also state the reason why the person revoking the AMD could not do so himself.

Section 7(4) - It is the duty of the person "who has witnessed a revocation, whether made in writing, orally, or in any other way in which the patient can communicate, to inform the Registrar" of the revocation.

 

Will the hospital know if I have made an AMD?

 

Hospital staff, including doctors and nurses do not know who has made an AMD as it is confidential, and they are NOT allowed to ask you if you have made an AMD. Hence, you are encouraged, to inform the hospital staff if you have made an AMD.  However, if your attending doctor has reasons to believe that you are terminally ill and unable to make your wishes known to him, he can check with the Registrar of Advance Medical Directives on whether you have made an AMD.

 

Is the AMD a type of euthanasia or mercy killing?

 

No, AMD is NOT euthanasia or mercy killing. Euthanasia/mercy killing is the deliberate ending of the life of a person suffering from an incurable and painful disease by unnatural means, such as the administration of lethal chemicals.

An AMD acts as advanced instruction for form, you instruct your doctor in advance, not to prolong your life with extraordinary life-sustaining treatment, and to let the dying process take its natural course when you become terminally ill and unconscious.

Does the AMD Act encourage euthanasia?

No, the AMD Act does NOT encourage euthanasia. On the contrary, the AMD Act is explicitly and categorically against euthanasia. The Act states:

Section 17(1) - Nothing in the Act shall authorise an act that causes or accelerates death as distinct from an act that permits the dying process to take its natural course.

Section 17(2) - It is hereby declared that nothing in this Act shall condone, authorise or approve abetment of suicide, mercy killing or euthanasia.

A terminally ill patient CANNOT use the AMD to commit suicide, nor does the AMD allow doctors to assist in any suicide attempt. This is punishable by law.

Can a parent make an AMD on behalf of his/her child? Can a parent or sibling make an AMD on behalf of a mentally incapable person?

 

No one can make an AMD on behalf of another person, whether child or adult

 

Form for Advance Medical Directive:

http://www.moh.gov.sg/content/dam/moh_web/Forms/FORM1AMD(270905).pdf

 

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