DEATH and DYING
(WSJ) One in every seven dollars spent on health care is spent during the
last six months of life. Most Americans say every person deserves life prolonging
care. But is it worth it? Further, can we afford it? 28% of the Medicare
budget is spent in reimbursements to people over age 65 IN THEIR LAST YEAR
OF LIFE. THE BULK IS SPENT IN THE LAST 30 DAYS. That's about $30 billion.
That amount could account for about 2/3 of the cost of providing health care
for the 37 million uninsured Americans. About 70% of all who die annually
are elderly. And as the average age of Americans get older- currently 12.5%
are over age 65- the cost for care will rise dramatically. The ever increasing
use of new diagnostic and life prolonging technologies adds another 25%.
The issue creates a dilemma for all- morally and financially. But it seems
logical that the most care should be spent ONLY on those who have a chance
to recover. The right to life forms should be mandatory and limit the excess
costs and efforts.
A recent survey of 7,600 elderly in 1986 noted that elderly women have a less healthy last year of life as compared to elderly men. It showed that 14% of all who died after 65 were fully functional and 10% were severely restricted. As age progressed, the statistics obviously got worse. 20% between ages of 65 to 74 were fully functional while only 3% were severely
restricted. At age 85, only 6% were fully functional while 22% were severely restricted. Of particular note is that women were 40% less likely than men to be fully functional in the last year of life and 70% more likely to be severely restricted. That's why more women should consider long term health care policies and why all should have Durable Powers of Attorney for Health Care.
ELDERLY AND ILLNESS
A new study of 7,500 people who died after the age of 64 and their quality of life noted that upon reaching 65, they had, on average, about two more decades to live. Their main concerns were ill health, disability and dependency before death. Only 14% of those dying after 65 were fully functional in their last year of life, and about 10% were severely restricted in terms of physical and mental health. A higher percentage of women were in poor physical and mental health and under institutional care (expected since they live longer).
DYING: (Ethics on Call) Who will make the decisions for you if you lay dying? Even if you have made a living will/physicians directive, it may be out of date and require additional review to determine what your true wishes might have been A new subspecialty in the medicine field is the bioethicist who is concerned about "how decisions get made in medicine, who makes them and according to what principles. Their job is to " protect the rights, promote the interests of the patient and support their families and their loved ones"
Their basic ethics involve:
1. The principle of beneficence- that the goal of medicine is to promote the well being of the patient
2. The principle of proportionality- that if a patient may either be harmed or helped by a treatment, then the treatment should only be offered if the benefit outweighs the burden
3. The principle of respect for persons- the patients should be treated as autonomous beings and those patients who cannot make choices for themselves should be protected by others
4. the principle of justice-- that ill persons who are equal should be treated equally
5. The legal principle of self determination- that adults capable of making decisions have the right to consent to or refuse care, even if the result of that refusal is death
6. The legal principle of best interest- that those who cannot decide have the right to have decisions made that maximize their welfare.
Their job is difficult since they have to weigh the rights of the patient, doctor, family and society. For example, take CPR. "While in the case of a young and fit person it obviously makes sense, is it really that desirable for a 78 old man debilitated by a fatal disease and soon to die? In such case, we are only substituting a merciful death for a long and painful one. It is true that a few more days- perhaps even weeks- of life may be gained, but if it is at the cost of dignity, pain and suffering, are we really doing what is right?" "For people with a terminal disease, dying after a successful resuscitation is usually much worse than dying before. The process virtually ensures a slower, harder, more painful death, often on a respirator, condemned to the bizarre netherworld of the ICU, where there is neither day nor night but always light, noise, movement and suffering".
COMPASSION IN DYING: The following is a summary of Guidelines and Safeguards for a hastened death. From the non profit organization, Compassion in Dying, PO Box 75295, Seattle WA 98125-0295; 206 624-2775
Quality of Care
Process of Requesting Assistance
Mental Health Considerations
Family and Religious Consideration
If you think you could never consider this type of alternative, just listen to these testimony's to Compassion case submitted to the US Court of Appeals, "...my 80 year old father was diagnosed as having terminal abdominal cancer. He went to his doctor with two requests: not to prolong things and to keep him as pain free as possible. However, when the time came, the doctor did neither. And so my father, to whom dignity was very important, lay dying, diapered, moaning in paid, begging to die. I called the doctor's office, crying, begging him to relive Dad's pain He refused, saying morphine could kill him."
And, "Daniel's biggest fear was that of losing his mind. He wanted to die before he lost his mind. Daniel had reached the final stages of AIDS. He sought help from the medical community but did not receive any. So when he felt his mind was leaving him, he opted for a unique solution....withholding his insulin and letting himself die of insulin shock. It was a very long five days of convulsions, dementia, violent outbreaks and a total loss of self dignity".
You still may not agree with Compassion's position about dying, but you must at least be aware of it.
EATH CHECKLIST: (Kievman)
After a few weeks:
The paperwork should begin to diminish. You can then take the opportunity to make any necessary changes in ownership registration for Autos; stocks, bonds and other investments; residence, boats, savings and checking accounts. Ms. Kievman suggest that all major decisions should be deferred for at least a year. I think that is an individual issue and there may be certain issues that must take precedent- for example running the business. Major decisions cannot be avoided if creditors and customers are involved. Ins such cases, just make sure you use independent and objective outside help to get you through. But you need to be prepared immediately for these type of situations.
DEATH: (Kievman) She suggests the following when you know a spouse is dying:
GRIEF: Psychotherapist Alexandra Kennedy say that when loved
ones die you should
She noted that many people come out of grief with renewed creative energy and purpose."We all lose a parent if we don't die first. If we are willing to go into that experience fully and authentically, we will come out different than who we are going into it. And if we aren't transformed by it, we will probably be numbed by it and our lives diminished."
WHEN YOU ARE SICK: (Ethics on Call) Ask these questions of your doctor and other caregivers.
1. What is the name of what I have
2. If you don't know, what are the possibilities
3. Are there tests you need to run to know more
4. What is the purpose of each test
5. Do these tests have risks associated with them
6. What will we do with the information you get. Will it change anything
7. Is the information you need worth the risk of the test
8. What is my condition doing to me now.
9. How did I get it, if you know
10. Is it related somehow to my past behaviors
11. Will my changing my behavior have an effect on my problem
12. What usually happens with this disease
13. What do you think now will be the likely course or outcome of the disease or condition
14. How severe or advanced is my case
After these questions are asked- if you don't feel comfortable in asking them, is there someone else who will objectively and unemotionally do it for you?- then you must consider your options. Make sure your physician covers the risk and benefits or each option and ask
1. How will taking this option make me feel.
2. What is the statistical experience in terms of success
3. What defines "success" for this option
4. What will it mean to my quality of life
5. If I am to die, how might it affect the circumstances of my death (is hospitalization necessary or can I die at home?)
6. What are its possible negative side effects
7. What is the time line for this decision
8. Finally, ask what your physician recommends and WHY. Then it's up to you.
The decision may not happen automatically, for people are not necessarily
equipped with the intellectual resources and skills they need to make tough
decisions about their own medical care. This certainly includes the young-
since they have not had much life experience- or the very old who may be
slightly too infirmed to make a rational decision. Nonetheless, these decisions
must be made by the millions each day and you should try to prepare for these
emotional situations that, almost universally, will occur in your life. (Final
note. Ethics on Call is a superb book on the medical decision making processes
by the layman and physicians/hospital, by Dubler and Nimmons, published by
Harmony Books, New York, 1992.)
COPING: A life threatening illness causes people to cope differently. Psychologist Therese A. Rando noted these three types of coping
Another author, Weisman, noted 15 different coping mechanisms in coping with illness
1. Seeking information and guidance
2. Sharing concerns with others and seeking consolation and support
3. Laughing it off
6. Confronting the illness and acting appropriately toward the problem
7. Redefining the illness or crisis
8. Resigning oneself to the illness
9. Doing anything, even substance abuse that defies good judgement
10. Reviewing alternatives and consequences
12. Conforming to what is expected or advised
13. Blaming someone or something else for the problem
DYING: (1996) Several months ago you might remember my comments about my being named as an agent on some clients living wills so that they could be reasonably assured that I would be independent enough to see that their wishes were carried out. Well, it appears that that might be absolutely necessary since a four year study showed that Doctors repeatedly ignored their patients wishes, their pain often went unrelieved and their doctors many times persisted in using extreme measures to keep the person alive. They did indicate that things were better than previous, but still commented that the common hallmark of hospital deaths remains "a mechanically supported, painful and prolonged process of dying". The study of 4,031 patients with end of life care:
Those that indicated no resuscitation 31%
The doctors knew of this request 47%
The request had been entered on charts 49%
Patients who wrote a request for DNR
(Do Not Resuscitate) within 2 days of death 46%
Spent a minimum of 10 days in ICU 38%
Were on a respirator within the last 3 days 46%
Conscious patients who died after experiencing moderate to severe pain in
at least half the time in the last 3 days of life. 50%
Also about 1/3 of the families spent all or most of their savings "during an vain and unsought effort to postpone an inevitable death."
A later study of an additional 5,000 who used nurse advocates- those who
attempted to encourage doctors to communicate with their patients and determine
their wishes and to avoid the futility and unwanted high technological efforts
when death was near- reported that patients still spent the same time in
intensive care and almost all suffered as much unrelieved pain in their last
days and almost as many ended up on ventilators- often against their wishes.
Dying is bad enough without being abused in the process.
RESPIRATORS: In defense of some of the doctors deliberate attempts to sustain life comes this commentary from the Essential Guide to a Living Will. Any patient that is admitted to a unit with a breathing problem is almost automatically put on a respirator since, as the doctors said, "allowing a patient to die of respiratory failure is an awful death". And once that happens, the "respirator will never be disconnected unless the patient no longer needs it or is dead." The living will at this point can be used to terminate or eliminate any other life sustaining measure- drawing blood for tests, intubation, antibiotics, feeding- just about anything except for turning off the respirator. The turning off of the respirator would be the proximate cause of death which is loathe to many doctors- justifiably so. But is there a way to avoid the respirator initially if you are brought in a "short to die" condition? Yes, apparently. Use a specific DO NOT RESUSCITATE. Even that is not perfect because it must be verified in sufficient time and legality to be accepted by the admitting physician. Certainly, some physicians are more liberal, but it's your life and your death. You can't decide how you want to come into this life, but you can decide, in many cases, how you'll go out. Based on some of the commentary from the book mentioned above, I have revised my living will to include some more definitive statements. The author, BD Colen, also indicated that irrespective of the written physicians directive, it's probably an excellent thing to have a video tape of your wishes made.
EUTHANASIA: The issue of physician assisted suicide is one
that many of us will face as we get older. I think that, by 2010, the majority
of states will have enacted laws allowing its use. Various safeguards, as
defined below, have already been instituted to try and avoid any hint of
impropriety in the decion making process. Most involve leaving out certain
procedures to hasten death.
requires a fully informed voluntary decision
In the Netherlands, euthanasia is still not legal. However, physicians are not prosecuted if they follow certain procedures
However, enacted in 1994, physicians may
Their investigations indicate that are three main reasons for a patient to request euthanasia
FIVE STAGES: (On Death and Dying) Dr. Elizabeth Kubler-Koss
wrote that there are five stages that a terminally ill person goes through-
denial, anger, bargaining, depression and ultimately, acceptance. Not everyone
goes through these in the same order and some never reach acceptance. Not
only must the patient/elderly person recognize what may happen, but so do
the rest of the family- though admittedly one does not like to think about
these things prior to it actually happening. But that is why I put it here
now so you can address- and potentially understand these issues before they
RIGHT TO DIE: (SF Chronicle) As shared on numerable occasions, I believe that people have a right to their lives- and deaths. A lengthy article on assisted suicide due to extensive pain also commented on the suffering due to bedsores, shortness of breath, inability to sit up, rashes, constant diarrhea and incontinence, internal bleeding, total dependency on others and utter exhaustion with the struggle to stay alive. The artificial means to prolong life under such conditions seems immoral. One doctor commented that, "these people that we have counseled who have died at home, surrounded by their loved ones, have had the most peaceful dying I have ever witnessed.
I have presented numerous guidelines by various groups in different countries regarding what a patient has to do to "allow" assisted suicide. Compassion in Dying states:
The effort by the volunteers for Compassion in Dying is very commendable.
But as a personal comment, I do not want to wait for "severe unrelenting
suffering." I recognize their liability, but I cannot see myself becoming
essentially a vegetable before I could get the appropriate dosage to die.
And while I am not in total agreement with Dr. Kervorkian, I think he is
providing a stimulus to our moral indignation about terminating a life that
has no further meaning. That infers the position of physical suffering as
addressed above and for those whose mental conditions will deteriorate to
the point of uselessness. With this I mean Alzheimer's. If I could recognize
that I was slowly dissolving into the netherworld of blackness to which I
could never escape, then I would end my life irrespective of the fact that
needless physical suffering had not yet commenced. Dr. Nuland's book "How
We Die" made it clear that the two worst ways to die were AIDS and Alzheimer's-
and only 20% of us will die "nicely". But also remember that, absent these
situations, many of us will live for a very long time so don't get your shorts
in a bind about having to do this tomorrow. The National Institute of Health
says that if men can get to age 60 without dying or heart disease, they can
expect to be stronger and less bothered by chronic ailments than women. And
as an enlightening statistic, only 10% of Americans 65 and older have chronic
health problems that restricts them from carrying on major activities.
DEATH: The Extreme Care, Humane Options (ECHO) is a project
aimed a better care for dying people. They conducted surveys on life prolonging
treatment of over 1,000 people and found, not necessarily surprising to me,
that few people had an interest or willingness to talk about death or dying.
Also, not surprising was the fact that more men refused to discuss the issue
than women. In regards to a hypothetical question on a woman who had been
in a coma for three years, 58% said she should NOT be put on a ventilator,
23% would use the ventilator but discontinue if no improvement, 10% said
not sure and only 8% said do everything possible. Of those who would discontinue
life support, 32% said no quality of life, 26% said that treatment would
only prolong life and 3% said it was too stressful on the family and only
3% said the treatment was too expensive for the family. The remaining 36%
cited a variety of these reasons. They noted that 90% do not have a living
will, yet the death rate is still 100%. We're all going to die. Let's not
screw it up.
DYING: 100% of you reading this will be dead at sometime. So, in addition to a will or trust also consider the following:
1. Prepare emergency instructions for who has the house and car keys, who will feed the pets, who will care for the children or elderly parents.
2. Make a copy of your phone book with all relatives, business contacts and friends so the survivors will know who to contact and for what.
3. Make a list of all retirement, brokerage and insurance accounts. Do this once a year and make all amounts and beneficiaries current. Remember that beneficiaries may often may predecease you and you don't want the courts to figure out who should get the money. Also note that you may not like these people any more. Some may have moved away, others bothered your cat, divorced you, etc.
4. Complete all burial and funeral instructions. Cover all religious issues.
5. Make sure at least two people have a copy of all wills, trusts, policies and instructions. One might be your attorney but does not have to be. However an attorney's office does centralize the documents and usually make it easier for everyone to know who to contact.
Remember that even before death you need to complete and power of attorney
for health care and choose an appropriate trustee. You may wish that person
to also have a copy of the documents either instead or as well.
MORE DYING: Probably the best thing about dying is that you only do it once. Heaven forbid I should ever be reincarnated, but if so, I want to come back as a Dung Beetle. I figure I've put up with so much crap in my life that I'd like to make some good use of it for once.
Anyway, one insurance company's claims experience shows that for insureds 65 years and younger, 75% of all death claims have resulted from critical illnesses including cancer, heart attack, leukemia, stroke, AIDS, ALS and brain cancer (at 5% and increasing). People that survive these illnesses tend to be disabled for at least 6 months.
DYING: (Archives of Internal Medicine 1996) The General comment when people die is that they would like to be surrounded by their loved ones and avoid the futile treatment of life sustaining measures. But researchers found that those deciding against life prolonging care did so partly because of the financial hardships that their beneficiaries would endure. Those not having much money were 30% more inclined not to bother with the measures. However, the more interesting issues is how money was addressed by the remaining family. Many articles have focused on the fact that perhaps greed was a considerable factor in not using extended care. But the study showed that the medical decisions made were effectively not influenced by finances.
DEATH: (NATIONAL CENTER FOR HEALTH STATISTICS (NCHS 1998) and the Centers for Disease Control and Prevention (CDC). "The majority of deaths (56%) occur in a hospital, clinic or medical center; 19% in a nursing home and some 21% of people died at home."
Dying- (USA Today 2002) With better medical care and a drop in smoking rates, death rates for heart disease have been cut in more than half, and they have declined even more dramatically for stroke and other cerebrovascular disease.
Death rates from injuries, particularly motor vehicle crashes, have also fallen since about 1970, with safer cars on the road and more people wearing seat belts.
It's not all good news. Death rates for diabetes, along with the number of cases, are climbing, largely the result of a sharp increase in obesity.
The average baby born in 1900 could expect to live 47.3 years and that gauge has been climbing ever since. By 1950, life expectancy had risen to 68.2, and it reached 76.9 in 2000.
Throughout the century, women and whites have lived longer, but those gaps are closing, the report shows.
In 1950, whites lived 8.3 years longer than blacks. By 2000, that gap was 5.6 years.
For gender, the gap was at its peak in 1970, when women lived 7.6 years longer than men. By 2000, the gap was 5.4 years.
The report, produced by the National Center for Health Statistics, found drops in death at every stage of life and for many diseases. Specifically:
Infant mortality: The portion of babies dying before their first birthday was at a record low in 2000, 6.9 per 1,000 live births. That rate has fallen 75% since 1950.
Young deaths: Mortality among children and young adults, between 12 months and 24 years, declined by more than half since 1950. Researchers credited drops in death rates in accidents, cancer, heart disease and infectious diseases. Homicide and suicide rates generally increased over the half century, though they have been falling since the mid-1990s.
Adults: Death among adults age 25 to 44 declined by more than 40% between 1950 and 1999. During the mid-1990s, HIV was the leading cause of death for this age group, but these rates have fallen significantly.
Older adults: Mortality among adults age 45 to 64 fell by nearly 50%, including drops in heart disease, stroke and injury. Cancer is the leading cause of death in this group, and those death rates rose slowly through the 1980s and then began to decline.
Heart disease: Much of the improvement in life expectancy is traced to falling heart disease rates. In 1950, just over 585 people in the United States developed heart disease for every 100,000. By 1999, that had been more than cut in half, falling to just under 268 people per 100,000.
Stroke: In 1950, nearly 181 of every 100,000 people died of stroke and other cerebrovascular disease. By 1999, it was just 62 per 100,000.
The report, which also examines trends in the use of hospitals, found fewer people being admitted and shorter stays for those who do go in. It found a sharp drop in use of home health care, a reaction to new Medicare payment restrictions.