SF/TSG #012

This material has been developed by and is presented by The Sandwich Generation ®

Protect Your Last Days:
Living wills, Medical Proxy
By Carol Abaya, M.A.

Carol’s  Note:  I, as a human being, want to control my life as much as I can.  From the simple day to day control -- of what I’ll eat for breakfast or dinner -- to the more complex.  What, for example, do I want done to my body and "I" Self as I live and eventually die?  So, I have a Living Will, an Advance Health Care Directive.  It’s called different things in different states.  But the bottom line is that whatever happens I want to control decisions!  I do not want strangers or a court to make decisions for me.

I want my family to handle medical decisions as I would if I could, and not to feel guilty if they make a DNR (Do not resuscitate) decision.  I want them to know they are following my deepest desires.

The Crossroads

Faced with the first generation to live well into their 80’s and 90’s, families and professionals in health care are trying to balance the power of medical technology to prolong life with the rights of individuals to end it.

As the National Council for the Right to Die puts it, "Longer life spans mean that people are increasingly likely to die of extended illnesses, which can cause suffering that  medication cannot relieve.  Alzheimer’s and other dementing illnesses can mean terrible psychological pain, uncontrollable anger, and paranoid fears.  Heart and lung diseases can lead to great discomfort and frightening difficulty in breathing.  When medical science cannot ‘fix’ the problem, humane and respectful care for the patient as a person become crucial."

One Elder Law attorney puts it this way: "Modern medicine has the ability to keep a person alive for an extended period of time -- and perhaps long after he or she would want to be kept alive.  People are living longer, so it is most important to plan now just in case you are unable to at a later date."

Fortunately, attitudes -- and the laws -- toward death and dying have changed in recent years.  More people want to have a say as to how they will live their last days.  Most Americans believe there are circumstances when an individual has the right to refuse medical treatment even if it means death will occur.  Yet less than one-third of adults have a Living Will.

Government Says "Yes"

The courts and legislatures have acknowledged that people do not have to live with extreme pain, the loss of dignity and control, emotional isolation and even financial ruin.

As early as 1914, the Right of Self Determination was recognized by the courts.  "Every human being of adult years, of sound mind, has the right to determine what shall be done with his own body."

Common law also states, "No right is held more sacred, no right is more clearly guarded by law, than the right of every person to control his destiny, free from all restraint and interference."

More recently the Federal Government passed the "Patient Self-Determination Act," which became effective December 1991 for all Medicare and Medicaid patients.  Under this directive, hospitals and other health care facilities must inform patients of their right to have a Living Will.

In addition, all states, either by law or court cases, support the right to die.  The law in many states puts the physician at risk if he or she does not follow the instructions in a written directive or of a representative designated in a legal document.

If a patient has a Living Will or health care representative and the physician refuses to comply with the patient's wishes, the physician, in a number of states, is open to civil lawsuit for any of the following:  assault, battery, negligence for failing to obtain proper consent, and invasion of privacy (the right to refuse treatment).

What is a Living Will

Simply stated, a Living Will conveys a person’s wish not to be kept alive by heroic measures or artificial means if he or she is suffering from a terminal condition and/or death is imminent.  Or it can state that a person does want to be kept alive by machines.

A Living Will can describe in very specific terms the type of health care a person does not want or it can simply state that extreme measures are not to be taken.  Or it can state that life-sustaining machines are desired.

The most common usage of the word Will is as a legal document
which disposes of a person's property and assets upon death. 
In Latin and Greek, the word literally  means a "command."
It is also dealt with in biblical regulations. In addition to its legal value,
a Will has always carried with it great moral weight. The wishes of the
deceased had to be carried out.
Thus, Living Wills today should be looked upon as a "command"
as to what the person wants in relation to medical treatment and death.
All states today recognize and accept an individual's right to control
his or her last days.

The Living Will laws in most states focus on "prognosis" -- what is the likelihood a person will recover or will be cured of the illness?  A key word is "irreversible."  Is the condition reversible or irreversible?  If irreversible, then any life sustaining activities are only prolonging the dying process.  Irreversible and terminal illnesses include cancer, Alzheimer’s, Parkinson’s, and severe senile dementia.  While not always explicitly addressed, in most states being very elderly and frail and in generally declining health also fit into the "prognosis" criteria.

There are two parts to a Living Will:  instructions to doctors as to what is wanted and not wanted, and the appointment of a health care representative to make decisions if a person cannot make them himself.  Anyone over 18 who is mentally competent can serve as a health care representative or witness, with certain stipulations.  In most states, witnesses cannot inherit or be related to the person signing the document.

Steps in Making A Living Will

Elder Law attorneys and ethicists all agree that it is important to have family discussions on the subject as in many instances at least one family member has to make the decisions for a person who becomes incapacitated.  It is also very important that the older person be permitted to make his or her own choice.  Younger generations have different values, note Elder Law attorneys, and should not pressure their parents or grandparents to make decisions not in accord with their own values.

Think about your desires in reference to "quality of life."  What "disabilities" or living restrictions do you want to live with?  Or feel you can accept?  What disabilities do you not want to live with (cannot accept)?

  • Identify the kind of medical care you want and what you do not want done.  Do you want to be hooked up to life sustaining machinery?  Or not?
  • Identify a family member or close friend you can trust to do what you want done.  Do not simply appoint someone to speak for you.  Ask; be sure the person is willing to carry out your wishes.
  • Fill out the form either by yourself or with the help of your health care representative or attorney.  Make sure there is a clause that states you "willingly" signed the form and "were not under any duress."
  • Avoid complex, lengthy documents which can be confusing and open the door to family fights if there is a difference of opinion on what should or should not be done.  Most hospitals have a simplified form which covers basics and allows the health care representative to deal with the complex issues.
  • Sign it, properly witnessed and notarized.
  • Give your health care representative and family physician a copy.

Remember:  Like a regular Will, you can always cancel, change, or add stipulations to a Living Will.

A Communications Process

One doctor, who heads the ethics committee at a large medical center, said, "An advance directive is a communication tool.  The old and young can and must gain the confidence to talk with and listen to one another about death and dying, and then to discuss how they wish to be treated in the event of serious illness.  Expressing our wishes is not only important to families but also enables physicians and health care providers to honor a patient's wishes and provide continuum of care as the patient moves through the health care system."

Many people feel they don't know enough about today's medicine capabilities and technology to be specific in what they want and don't want.  Cassidy recommends, "Write a clear statement of your values and the quality of life that is acceptable to you.  State among other things the importance of being without pain, being able to communicate with others, being capable of daily self-care.  This can be followed with a statement that treatments which could enable you to have that quality of life, satisfaction and peace of mind are ones you would wish to be tried.  Then add that if it appears (after a specific period of time) that the chosen treatment will not bring about the quality of life you wish, you want the treatment withdrawn and thenceforth to be given only comfort care.  This kind of statement will obviate the need to decide on specific types of treatment:  the probable outcome of treatment is what will count, rather than the means by which it comes to pass.  The inner strength derived from this communication will be a reassurance and comfort as you and family members face near-death decisions."

Decisions are impacted by family dynamics, the hospital environment, and perhaps a crisis situation, one attorney told me, "Comfortable and appropriate decisions result from a communication process, which is critical.  The process is usually over-time.  However, if a person is in the hospital, time is not there because of the crisis.  Intimacy -- discussing wishes with family -- is not there.  And communication with physicians may not be there because often they are not skilled articulators.  A hospital environment does not allow the process to take place."

That Tough Decision

The line when a health care representative makes decisions is when the patient cannot understand the ramifications of treatment or non-treatment and cannot make an "informed" decision.  The patient does not have the ability to weigh alternatives and to evaluate consequences.

Prognosis -- whether or not the illness or state is reversible and the patient may recover -- is the main element in deciding to withhold life support systems or treatment.

Medical prognosis is based on technical medical criteria and evaluation.  Physicians are the only ones able to determine whether or not a condition may be reversible and the likelihood of this occurring.  Physicians can also tell the risks and possible side effects of any treatment.

Russell McIntyre, Th.D, of the Robert Wood Johnson Medical School in New Jersey, notes that ultimate decisions are a balance of ethics, medical reality, and an individual's rights.

According to the American Medical Association code of ethics established in 1847, physicians have an obligation to do no harm, honor the sanctity of human life and alleviate suffering. 

However, McIntyre notes that given medical capabilities today there is sometimes a conflict between the sanctity of life ethic and the one connected with alleviating suffering.  If sanctity of life is primary, then suffering may be prolonged.  McIntyre says that "reasonableness" needs to be an integral part of any medical diagnosis.

Today, more physicians are accepting the wishes of their patients and are not requiring themselves to go to extremes to keep the terminally ill or old and frail alive.

A second key medical element involves the term "brain dead."  In 1968, the Harvard Medical School developed criteria for determining brain death, which was determined to be the same as dead, even though the heart may still be beating.  Various tests are used to make the determination.  It is then recommended that the test be given again 24 hours later.

The question that needs to be asked when dealing with the use of machinery, or of artificial means of keeping a person at least partially alive, is "if the machinery is shut off what is the likelihood of that person continuing to live?"

But the decision making predicament of a health care representative is not always easy even using the prognosis criteria.

One  attorney who has been involved in elder law for 25 years related the following story as he himself  was health care representative for a frail 80-year old man who lived alone and had no serious health problems.

A friend called the elderly man and got no response.  Then she went to the apartment, and still no response.  On the second day the friend had the apartment superintendent unlock the door.  "The man was on the floor, dehydrated and delirious," he said.

"The doctor at the hospital said it was unlikely that the man would recover, and I, as health care representative, signed a DNR order.  We decided that hydration treatment (getting fluids into him intravenously) would be tried," he recalls.  "In three days he recovered enough to be transferred to a nursing home.  With proper care, especially proper food, he recovered completely and returned home."

Because this attorney had health Power of Attorney, the patient had someone he trusted make decisions and oversee treatment and care.  If there was no Living Will, the man probably would have been left to die.

 Advice to health care representatives:  take a number of factors into consideration in addition to the basic medical prognosis.  Age:  if the person is older, has a serious health condition and there is little likelihood of the person "recovering," then let go.  Or if the person is elderly and does not want to live any longer, let go.

"On the other hand, if the person does not have serious health problems, regardless of age, an initial decision should be to provide treatment and then evaluate results and a prognosis."

 

 

Definitions of Legal Terms

There is a substantial difference between a Last Will and Testament and a Living Will or Advance Health Care Directive.  A Last Will deals with a person's wishes after  death.  A Living Will tells what a person wants done while he or she is still alive.

Following are the basic components of a Living Will and what each addresses:

Instruction Directive:  The heart of a Living Will is called an Instruction Directive.*  This contains a person's wishes and instructions to health care providers for the withdrawal, withholding or administration of health/medical care when the individual lacks "decision-making capacity."

"Decision-making capacity" is defined as a patient's ability to understand and appreciate the nature and consequences of health care decisions and to reach an informed decision himself or herself.

Proxy Directive:  A Proxy Directive is a durable medical power of attorney and designates a person or an alternative person called a health care representative,* who acts when an individual is determined to lack "decision-making capacity."

The health care representative is empowered to make medical care decisions on behalf of the person unable to make his or her own decision.

Any competent adult can serve as a health care representative with certain exceptions.  A physician who makes or confirms a medical decision that the patient lacks decision-making capacity, cannot be designated as a health care representative.  The designated representative cannot act as a witness to the signing of the document.

The signing of a Living Will must be witnessed by two competent adults or an attorney, or it can be notarized.

A Living Will becomes effective when it is given to the attending physician and/or to the health care institution (hospital or nursing home, etc.) and after there is a determination by two doctors that the individual is not competent to make health care decisions.

      *Terminology may vary from state to state.

 

 

LIVING WILL: Medical Terms

Complicated, awesome-sounding medical terms easily trip off the tongues of doctors.  Most often the patient or Sandwich Generationer has to first ask the doctor to spell whatever it is he said.  Then they have to ask for a "translation."

In thinking about -- and then making -- a Living Will, the following terms are commonly used, and these treatments can be the key to life or death.  So, it's important to understand them.

Do Not Resuscitate (DNR) is a medical order to refrain from cardiopulmonary resuscitation if a patient's heart stops beating.

Cardiopulmonary Resuscitation is used on a patient whose heart has stopped beating or who has stopped breathing.  It involves drugs, electric shock, and/or CPR (cardiopulmonary resuscitation) in order to restore the heartbeat.

Artificial Nutrition and Hydration enables a patient to receive food and fluid through a tube in the veins, nose or stomach.  Surgery may be required.

Invasive Diagnostic Tests include procedures such as inserting a flexible tube to look into the stomach or a biopsy.

Ventilator or Respirator is a machine that moves air into the lungs of a patient who is unable to breathe naturally.

Life-Sustaining Treatment are medical interventions administered to a patient that prolong life and delays death, such as giving antibiotics in cases of infection, or the use of machinery.

Palliative Care are medical interventions intended to alleviate suffering, discomfort, and dysfunction but not to cure (such as pain medication or treatment of an annoying infection).

Terminal Condition, in most states, is a status that is incurable or irreversible and in which death will occur within a short time.  There is no precise, universally accepted definition of "a short time," but in general it is considered to be less than one year.

Persistent Vegetative State as defined by the American Academy of Neurology is "a form of eyes-open permanent unconsciousness in which the patient has periods of wakefulness and physiologic sleep/wake cycles but at no time is aware of himself or his environment."

 

 

Having No Living Will:
A Disservice To Self  And Loved Ones

Besides being a legal command, a written Living Will carries substantial moral weight.  It cannot be easily ignored by family members or health care providers. And, if the courts become involved they usually follow the values and preferences expressed by the patient.

But what happens when a person does not plan ahead of time?

If a person does not have a Living Will or has not discussed desires with key family members, he or she is leaving himself or herself vulnerable, open to the whims of physicians, hospitals, the courts,  to complete strangers.  They will make critical decisions based on their own beliefs that may not be the same as those of the patient.

The patient is also placing a tremendous emotional burden on loved ones who have to make medical decisions.

"The pain of members and friends of those in comas over long periods of time and in a persistent vegetative state while attached to life preserving machinery led to the advent of the Living Will," noted a  Rabbi involved with family issues for many years.  "Those who wish to spare their family from this agonizing decision may decide on a Living Will."

While death is a very sensitive subject, everyone   should have a Living Will.   Everyone should discuss desires with family members.  Sandwich Generationers should have a Living Will and should encourage parents to have one.  Sandwich Generationers who do not discuss the subject with aging parents leave their parents vulnerable to the medical profession as well as their own emotions during a crises.  Sandwich Generationers who do not discuss the subject with their children are leaving themselves vulnerable to strangers.

Alan D. Lieberson, MD, J.D, and author of "The Living Will Handbook," says, "It is difficult for family members to make the decision not to keep a relative alive through the use of modern technology despite the fact that the patient cannot return to a meaningful life.  Living Wills make this process easier by declaring what the patients would choose if they were able to do so themselves.  It is easier to decide one’s own fate than to decide the fate of others.

"The fact that a patient has decided his or her own fate minimizes the guilt that loved ones frequently experience when they decide to stop therapy for a family member.  Physicians also benefit from this guidance as they will not be confronted later with a claim of improper care.  Without direction from the patient, standard medical care is directed toward maximum care in the maintenance of life.  This philosophy is the doctor’s creed in keeping with the medical ethics of the Hippocratic Oath."

With No Living Will:

With no living will:

  • A patient may be subjected to painful and often unnecessary medical procedures.
  • The life that is maintained is not a life of quality, but one of pain and suffering.
  • If the patient is unable to make medical decisions, physicians will usually decide in favor of prolonging treatment, even if that isn't what the patient would want.
  • The question will be raised as to whether aggressive treatment will merely prolong an imminent dying process.
  • The patient has placed the burden of making important decisions onto a child or other family members.
  • The patient has placed considerable stress, fear and anxiety upon children who have to make tough medical decisions.
  • The adult child, the Sandwich Generationer, may be torn between wanting to prolong the life of a loved one and at the same time wanting to end the suffering.  Guilt is a key emotion.

Scenario

Scenario:  An elderly widow in California, with the beginning of Alzheimer's, was in the hospital for a fractured hip.  She did not have a Living Will.  No one had Durable Power of Attorney, and at times she was mentally confused.  Doctors were treating her but rudely rebuffed attempts by her only relative, her brother, to get information about her condition.  "We don 't have to talk with you," they said, "You have no right to question us."

For several days, the brother, James, tried unsuccessfully to talk with the doctors.  James finally sought the help of an attorney.

The attorney told me, "The doctors refused to give James any information about the diagnosis, the prognosis or the treatment.  They refused to allow him to participate in treatment decisions.  They kept moving Irene from her room, to x-ray, to physical therapy.  All these moves confused her."

The attorney visited Irene in the hospital, talked with her and the social worker to make sure Irene understood the need to give James the legal right to get information from the doctors and to make decisions for her when she couldn't.  After drawing up the Durable Power of Attorney document, he said, "I returned to the hospital with James, the social worker and a notary public.  We did a reality check, to make sure Irene understood everything before signing.  I deliberately put in a clause that said if a doctor did not cooperate with James, the doctor could be terminated, sued or both."

Only after the doctor was given the POA document would he cooperate.

"But for those several days, Irene was vulnerable, left to the wishes of the doctors and hospital staff.  There was no one who could act on her behalf,"  he noted.  And he added, the cost entailed in his having to go to the hospital, drawing up the document and returning to the hospital was much more than if Irene had signed a POA when she was still well.

According to the law in most states, physicians and nursing home staff must  abide by the wishes expressed in a Living Will and take direction from a health care representative.

Thus James was finally able to demand and receive information from the doctors and to make decisions for his sister.

At Mercy of SNF

This same attorney related another case where a woman in her 90's, in a nursing home, had no Living Will, and the home staff refused to cooperate with the daughter and refused to accept a DNR order.

"The daughter had to go to court to be appointed conservator," he said.  "Between hearings and an appeal, this process took a year and $35,000 in legal fees.  During this time the elderly woman was at the mercy of the nursing home staff."  He added  that a Living Will that would have cost maybe $150 to $200, would have saved not only the huge expenses, but the anguish of the daughter.

 

What  Happens  When  a  Person
Does  Not  Make  That  Critical  Decision

Scenario:  An 80 year-old woman, named Anna, lives alone in an apartment.  She is mentally alert and able to handle most every-day chores and her financial affairs.  On the way home from grocery shopping, Anna slips off the curb, breaking her writing arm and wrist.  She has to be in a cast (from elbow to fingers) for at least six weeks.  She is able to get some home and personal care help through visiting nurses services.

It’s the beginning of the month and Anna’s rent is due; the telephone and electric bills come in.  Her social security check comes in.  But she cannot write out checks because her hand is in the cast.  So bills aren’t paid.  Four weeks later, her hand still in the cast; Anna’s rent, telephone and electric bills are due.  Again they aren’t paid because no one else can write checks for her. 

Repercussions:  Anna receives threatening letters from the landlord, who says "pay or move out;" and from the telephone and electric companies, who say service will be cut.  In addition, Anna has no way to get money from her bank account to pay for groceries  or medical bills.

Scenario:  A 65-year-old working man, Fred, lives alone in his own home.  As he transfers groceries from the shopping cart to his car, he loses his balance and falls.  Fred breaks three fingers and has fractures in his wrist.  He has to be in a cast for at least a month.

It’s the beginning of the month.  Fred’s house mortgage and car payments are due.  Telephone, electric and gas, and car insurance bills come in.  The next month comes, with the mortgage and other bills to be paid.  But Fred cannot write checks because of the cast and no one else can write checks for him

Repercussions:  Fred faces late charges for not paying his mortgage on time.  He receives threatening letters from the telephone and electric companies, saying service will be cut off.  The car insurance lapses, and he cannot access his money to pay for groceries or medical bills.

These two scenarios were made up, a composite  of situations that happen thousands of times a year across the country because people do not plan and protect themselves.  These scenarios are about mentally competent people who normally could handle their financial affairs. 

But what happens when a person, regardless of age, can no longer handle his or her own affairs, make appropriate decisions, and do daily living chores?  The following is a true story about a man who was extremely organized, who has a Living Will (with medical instructions) and a regular Will, for distribution of his assets after he dies.  But he gave no one Durable Power of Attorney so that that person could make every day living and financial decisions.   Nor did he appoint a health care representatives to actually make medical decisions.   Now he has severe irreversible senile dementia, is in a nursing home, and strangers are making decisions for him.

 

 

At The Mercy of The "System"

Cast of Characters:       

Ted, 86, a widower with no children, in a Mid-west nursing home.

Marie, 48, a niece who lives 300 miles away in another state.    She has two college-aged sons.

Richard, 42, Marie’s brother and a nephew who lives near Ted.  He has two young sons.

The County, who has taken over control of Ted’s daily life and financial affairs.

Marie and Richard’s two sisters, live out of town, play no part in the scenario and don’t want to.

Marie and Richard’s parents, who live nearby, want to, but are unable to do much.  Their father is Ted’s brother.

Marie sets the stage.  "Uncle Ted and Aunt Alma were always part of our immediate family life because they had no children of their own.  They were always included in family parties and on holidays.  Aunt Alma always baked special cakes .

"He’s an integral part of our family history.  He’s been a gem.  Richard and I can’t walk away and leave him to strangers."

Marie says her uncle was so organized that he put together an 8-page list of his mementos and household goods and asked all the family members to tell him what they wanted when he died.  He has made arrangements for his body to go to the University of Minnesota for research.  He has a Living Will, which gives instructions but doesn’t appoint anyone to oversee the doctors or nursing home staff.  He has a Testamentary Will, in which Richard is executor. ."

But because there is no Durable Power of Attorney, Ted’s finances are in chaos, and none of the family can gather the information needed to plan for Ted’s over-time care.  The county has appointed a lawyer to "represent" Ted, and Marie and Richard have had to hire a lawyer of their own in order to legally help their uncle.

Need for Help Increased

Ted lived in his own apartment for many years and did fine until he began having trouble with his checkbook and paying bills  and was not eating properly.  Ted’s brother, Marie and Richard’s father, couldn’t help because he is 80 and has MS.  So Marie looked to community services for help.  Meals on Wheels and a nurse from social services to check on medicine compliance were brought in.  This worked fine for about a year.

Then Ted started wandering around the apartment complex at all hours, and his time-of-day-orientation was reversed.  Ted’s temper flared, the apartment manager wanted him out of the apartment, and he was declared to be a danger to himself as well as others.  The social services case worker brought in Adult Protective Services  and that is when Marie and Richard’s troubles began.  APS took over making decisions for Ted.  And while Richard was eventually appointed temporary conservatorship of abode, it was several months before he was appointed permanent conservator.

When Ted was in the hospital, there was a court hearing but he refused to agree to a conservator.  He was then evaluated by the judge and psychologists who said he had irreversible senile dementia.  The court appointed a lawyer for him.  But in the meantime, Ted was at the mercy of the nursing home and community services people.  In one week’s period of time Ted was transported from the nursing home to the county hospital emergency room and then on the same day to the county crisis center.  Then he was sent to another hospital for psychiatric observation and medicine balancing, and then taken back to the nursing home.  While Richard was kept informed of this, he was unable to intervene or oppose these moves.

It has been left to Marie and Richard to try to sort things out and be able to legally compile an asset inventory and make arrangements for Ted’s care.  Marie lives in another state, 300 miles away.  She has MS herself.  In the first months, Marie went back and forth several times, driving one way and flying home the other, in order to keep expenses down and to conserve her strength.  Richard has two young sons and coaches their baseball teams.  He paid the rent on Ted’s apartment for two months, even though Ted was not there.  He has little extra income to pay for all of the legal expenses entailed in trying to get conservatorship and thus be able to help his uncle.  And while Marie is in a better financial situation,  "There is still a limit as to how much we can pay out, especially given the fact that Ted is my uncle and not my father.  It’s a grey area for my husband." Marie says.

Frustrations

Both the traveling back and forth, and the on-going telephone conferences with her brother and the lawyer they’ve had to hire are emotionally and physically draining.  In talking about his own part in the scenario and his feelings Richard says frustration is the key element.  His own life has been changed dramatically.  "The county told me to proceed with the paperwork to be appointed conservator.  Then they told me I should have an attorney.  Then the court appointed an attorney for Ted who has contested everything we want to do.  The court attorney is running up bills.  We don’t know who is going to pay these.  I have had to take time off from work for the court hearings.

"The telephone calls back and forth with Marie and our lawyer, with social workers and the court is very time consuming.  Also I try to visit the nursing home several times a week in order to oversee his condition," Richard says.

Other Family Help

Marie says her parents would like to be able to help more, but they can’t because of her father’s own illness.  He is wheelchair bound.  "We filter the information we give to them so they don’t get upset," Marie notes.  "We don’t tell them the daily details because it will only put stress on them.  They know we have problems and are working them through."

The alternative is to turn their uncle’s care over to the court and a professional conservator, as Marie’s two sisters advise.  But says Marie, "It breaks my heart.  We want to be there for him while he still knows us ... and beyond."

Richard puts it another way.  "At one point I was ready to back off.  But we were brought up that one doesn’t turn one’s back on family.  So we are doing the best we can."

Finally

After one postponement, the deciding hearing was held.  Marie and Richard were told they had to make the arrangements to bring their uncle into the court.  So, Marie ran up her phone bill to the nursing home and a car service.  She flew into town that morning and found her uncle wandering around the courthouse.  Both she and Richard were in court with their lawyer, and Ted’s court appointed one.

Beforehand, the court appointed lawyer had visited Ted in the nursing home and decided not to contest Richard being appointed conservator.  So Richard was finally given the legal authority to handle his uncle’s affairs.

But the end of work, especially paperwork, was not in sight.  As a consequence of the court’s action, Richard had to post a bond and on a regular basis has to provide the court with a detailed accounting of his uncle’s finances, income and expenses.  This reporting will not only take time, but will result in on-going legal and accounting costs, in order to satisfy the court requirements.  It also means Ted’s finances become public record.

With the appointment, Marie and Richard were able to remove Ted’s belongings from the apartment.  It took 13 hours of hard work to do this, so that Richard would not have to pay the third month’s rent.  Then Marie had to fly home.  Richard still has to gather financial data and records, put together information for IRS and evaluate his uncle’s resources and ability to pay for the nursing home.  Then there is the question of who will pay the fees of the court-appointed lawyer.

How does the family feel now?  Marie explains. "We’re all happy to get this settled.  But Richard still feels frustrated because he’s going to have to track down all the financial information.  This means he may have to take time off from work.  I can give him emotional support over the phone, but he’s the one handling the daily details."

Ups and Downs to Come

Marie and Richard are now also faced with a brand new problem.  Because he’s physically there, Richard will have to deal with it more.

Their parents would like to help, but they can’t.  "They feel guilty," Marie says.  At the same time, her parents seem to resent the time Marie and Richard have spent sorting out Ted’s affairs.  "I flew in for the court hearing, then we had to empty the apartment, and I flew home.  I didn’t get to see my parents that trip, and my mother was upset," Marie says.  "There will be more psychological pressure on Richard because he’ll be splitting his own time up more -- work, his immediate family and coaching, my parents and uncle.  There will be ups and downs for awhile.  But we’ll deal with them."

 

 

RELIGIONS SAY IT'S OK TO DIE

The courts, legislatures and many religious leaders support an individual’s rights to refuse medical treatment and to die.

The courts have even gone as far as to say that if a physician persists in treatment against the patient’s or family’s wishes that physician may be sued for treating a person "without consent."  In New Jersey, a physician who refuses to follow instructions in a Living Will can be fined up to $10,000.

Both legally and ethically, it has become more accepted that the physician’s obligation to treat is overridden by the patient’s right to refuse treatment.

In fact many religious leaders are turning to Biblical and other ancient writings to support the "right to die" issue.       

Life is sacred, and in Judaism compared to a flame.  Nothing may be done to put out that flame.  The Eternal Light on all Jewish altars represents life.

But incorporated in this eternal life philosophy is another one, dealing with dying and death.  A "goses" is a person for whom the flame of life is flickering out.  Death is imminent and all aggressive medical treatment options have been exhausted.  Are we commanded to continue the onslaught of technology and treatment when we find ourselves in this situation?  Most sects of Judaism say no.  "When the end is clear, when the journey is complete, when the flame is flickering out, we are under no obligation to continue suffering or pain for that only reduces the value of dignity and sanctity.  Up until a person becomes a "goses" all must be done to ensure a proper, dignified and sanctified end of life," notes Rabbi Richard Address, of the Union of American Hebrew Congregations in Philadelphia.

In fact, many Jewish leaders refer to Biblical writings which mandate that impediments to death be removed so a patient can die in dignity and peace.

Rabbi Joseph A. Edelheit, Emanuel Congregation in Chicago, says, "There is something morally misdirected about a society that cannot protect those who choose life from dying cruel and unnecessary deaths, nor can it protect those who would otherwise choose quiet death from cruel and unnecessary living."

Edelheit continues, "We live longer today than in any other time in history, but we do not live forever.  All of us will die one day.  Our Jewish devotion to living is not diminished by our honest recognition of the human condition.  Our society has created medical technologies which have preempted our reflective conclusions.  Those of us here and those of our dear ones who are not present can still make their own choice for life.  Let us each choose for oursevles and save others from an unnecessary and agonizing dilemma."

Most Christian sects also believe the individual has the right to choose death over medical treatment.  Most Catholics believe that deprivation of life sustaining treatment or fluids and nutrition to comatose patients who are not dying is akin to euthanasia. At the same time the Catholic Church says a person has the right to refuse "extraordinary means" or excessive hardships that offer little benefits.  However "extraordinary" has yet to be defined.

 

 

Beware Of’s

  1. Many preprinted forms narrowly define medical treatment discontinuation as applying to those with "terminal" illnesses.  They do not cover other situations where the prognosis indicates it is unlikely the person will recover or that the condition is irreversible.

    You will not be protected with these forms.  Physicians will not honor patient’s directives if the wording is too narrow.
  2. In most states, witnesses cannot be related to the declarer either by blood or marriage, nor can they witness the signing if they are heirs.
  3. In some states, a health care representative cannot be a beneficiary of a dying person’s estate and can be disinherited.
  4. Do not say 
    "I don’t want any tubes."  Routine glucose or antibiotic IVs are considered "tubes" and are necessary for treatment of even minor illnesses.  Feeding tubes can be used to handle short term problems - or just to keep a person alive.

    "I don’t want a ventilator or respirator to be used."  Often a ventilator or respirator is needed during routine surgery and is used for a short period of time or to make a person more comfortable after an accident.

    Be specific.  Say "I don’t want _________ if it will just prolong the dying process (or if it will not restore the quality of life acceptable to me or if the medical prognosis is negative)."

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