TERMINAL CARE --DECISION-MAKING---Choice in half of all deaths?

ONE MILLION CHOSEN DEATHS PER YEAR?

OUTLINE:

I. ESTIMATING THE NUMBER OF CHOSEN DEATHS IN THE USA.

II. WHAT IS A "MEANINGFUL ELEMENT OF CHOICE"?

    A. WITHDRAWING OR WITHHOLDING LIFE-SUPPORTS.

    B. WITHDRAWING OR WITHHOLDING FEEDING-TUBES.

    C. ROUTINE DECISIONS TO DISCONTINUE ALL CURATIVE TREATMENTS.

III. WILL WE BE "TREATED-TO-DEATH"?

IV. FULFILLING SAFEGUARDS WHEN MAKING LIFE-ENDING DECISIONS.

V. PUBLIC AWARENESS OF THE PRINCIPAL SAFEGUARDS.

VI. RIGHT-TO-DIE LAWS THAT PERMIT THE USE OF LIFE-ENDING DRUGS
       BRING THEIR SAFEGUARDS TO BEAR ON
       ONLY A TINY PROPORTION OF ALL DEATHS.

VII. USING PUBLIC SAFEGUARDS FOR LIFE-ENDING DECISIONS
        FOR ONE MILLION DEATHS EACH YEAR.

ONE MILLION CHOSEN DEATHS PER YEAR?

by James Leonard Park

    How many deaths in the United States
include some meaningful element of choice?
About half would be a good guess.
In the other half, the patients receive maximum medical care
until they die despite everything medical science can offer.

    If this is so, then in practice we already have the right-to-die,
but it has not been very clearly acknowledged by the medical profession
and it has not been fully grasped by the public.

    All of these chosen deaths have some informal process
for making the life-ending decisions.
But the principles used have not been discussed or validated by the public.
This also means that no public safeguards are being applied
to these one million chosen death each year.

    How many of these deaths with some element of choice were premature?
If reasonable, public safeguards were used for every life-ending decision,
probably some premature deaths would be prevented.
Perhaps one chosen death in 1,000 would be judged 'premature'
if public safeguards were applied to all life-ending decisions.
The exact number would depend on which public safeguards were used.

    Also, the application of public safeguards
would assure all who are trying to make medical decisions
that they have actually taken all appropriate care
to make wise and compassionate end-of-life choices.

I. ESTIMATING THE NUMBER OF CHOSEN DEATHS IN THE USA.

    How should we determine the best estimate of chosen deaths?
In the United States at the beginning of the 21st century,
about 80% of all deaths take place in medical institutions
such as hospitals and nursing homes.
These are not the unexpected deaths
that happen to healthy people every day,
which are reported in the news media.
But these are the routine deaths
that come at the end of some process of medical care.
They are reported on the obituary page of every newspaper.
Most of the readers of this essay
will undergo a death coordinated with medical care.

    Under modern medical care, a high percentage of deaths
include some meaningful element of choice.
Some people have estimated as many as 80% of hospital deaths
come after a medical decision to give up treatment aimed at cure
and to provide comfort care only.
If these guesses are correct, then 64% of all American deaths
include some meaningful element of choice.
But even if this estimate is not accurate,
—if, say, only 50% of hospital deaths include choice—
then 40% of all American deaths might be called "chosen deaths".

    But because we cannot easily define what we mean by
a "meaningful element of choice",
we will leave the guess at about half of all deaths in the USA,
which leaves us with a nice round number of 1 millions deaths per year.
(Over two million Americans die each year.)

    People with access to more detailed data about hospital deaths
are welcome to provide more accurate estimates.
And such data can be linked from here.

II. WHAT IS A "MEANINGFUL ELEMENT OF CHOICE"?

    The most common expression used by laypeople and doctors alike
when acknowledging the turn towards death is: "Nothing more can be done."
What we actually mean is that our care will now shift from cure to comfort.
There are still many things that can be done to ease the passage into death.
And the best terminal care can begin
once we shift away from using medical technology
that was intended to save the patient from death.

    A. WITHDRAWING OR WITHHOLDING LIFE-SUPPORTS.

    One example of a life-ending choice which we can all understand
is the removal of life-support machinery and tubes.
When we are receiving terminal care
in a hospital, nursing home, or hospice program,
we are probably receiving drugs to maintain our vital functions.
And we might also be connected to some form of medical technology
that is supporting a vital function such as providing oxygen or nutrition.

    If we are on life-supports in the intensive-care unit, then the options are:
(1) keeping the machines running or (2) pulling the plug.
Laypersons generally favor keeping the life-supports in place.
They do not want to "give up on" the patient.
And the medical profession has generally gone along with this option.
This means that the patient will remain attached to the life-supports
until the patient dies despite being maintained in those diverse ways.
Such deaths would be counted as taking place without any choices.
Such patients were "treated-to-death".

    However, if and when the prognosis for the patient is clearly terminal,
then everyone concerned wonders
whether the life-support measures should be discontinued.
And increasingly, this is just what happens
—after considerable discussion among
the doctors, the patient, and/or the proxies.
Specialists might give independent assessments
of the patient's condition and prospects.
If no recovery seems likely—if death is inevitable no matter what is tried—
then everyone might agree to discontinue the life-supports.

    Hospice care generally does not use life-support measures.
But the choice to enter a hospice program is already
a choice on the way towards the death of this patient.
One of the requirements for entering a hospice program
is that the patient has given up all medical treatment aimed at cure.
The doctor officially declares that the patient has a "terminal condition"
—meaning that the patient is expected to die within the next 6 months.
The duration of hospice care is usually much less
—often only a few days or weeks.

   There are probably some scientific studies
to discover just how often life-supports are terminated
for deaths in hospitals and nursing homes.
Usually the physician who is providing terminal care
will recommend that the life-supports be shut off,
allowing the patient to have a natural death.
Then the family (perhaps also the patient)
will think about ending all life-support measures
and authorize it if they are also convinced that no recovery is possible.

    Switching off life-support machinery is a "meaningful element of choice".

    B. WITHDRAWING OR WITHHOLDING FEEDING-TUBES.

    Another common example we can all understand is a feeding-tube.
At the end of our lives, some of us will be sustained by tubes
providing nutrition either into our stomachs or directly into our veins.
If a feeding-tube is the only way we can receive sustenance,
then disconnecting the feeding-tube is a life-ending decision,
since we all know that we cannot survive without food and water.

    Here again, scientific data probably exists
summarizing the number of patients
who were being sustained by some form
of artificial nutrition and hydration at the end of their lives.
In how many cases was the feeding-tube removed,
precipitating death within a few days?
And how many patients sustained by such tubes
died while the tubes were still in use?

Links to actual data can be provided here.

    Here again, there will be some discussion among all concerned
—including probably some medical professionals who have special expertise
in the disease or condition that is likely the cause the death of the patient.
And all will explicitly know that removing the tube
will be the immediate cause of the patient's death.

    In either of these cases
—life-supports generally and feeding-tubes specifically—
the certificate of death will name
the underlying disease or condition as the cause of death.
And the death-certificate might not mention
the support-measures used at the end.
(However, the complete hospital record will certainly have details
about the drugs, tubes, & machines used to keep the patient alive.)

    Removing a feeding-tube is obviously a life-ending choice.

    C. ROUTINE DECISIONS TO DISCONTINUE ALL CURATIVE TREATMENTS.

    Most life-ending decisions made in the hospital setting
would fall under this very broad category: ending curative treatments.
When all reasonable efforts have been made to cure us,
when we have received drugs, surgery, radiation, transplants, etc.,
and nothing medical science can offer is going to prevent our deaths,
then the life-ending decision comes in the form of
discontinuing the medical treatments that have not worked.

    The patient and/or the proxies consult with the doctors
to see if there is any reasonable hope in further medical efforts to cure.
And when they collectively decide that more treatments would be futile,
they shift to comfort care for the patient.
The curative drugs and treatments are discontinued.
Only those drugs that will ease the dying process remain in use.

    In such routine life-ending decisions,
most of the safeguards become irrelevant.
The medical facts are the compelling reasons for allowing death to come.

III. WILL WE BE "TREATED-TO-DEATH"?

    The most common scenario for hospital deaths
is maximum application of medical methods to cure the patient,
followed by the decision to end curative treatments
once it become clear than no further treatments would do any good.

    But some patients will be "treated-to-death",
which means receiving all possible medical treatments
until the last moment of life.

    Would it be correct to say that a minority of patients in hospitals
will continue to receive curative treatments until the last day of their lives?
It used to be standard medical procedure
to apply all possible cures, all of the time.
If no one makes a move to depart from that standard protocol,
then the patient would continue to receive
life-supports and curative treatments until everything fails anyway:
The patient dies no matter what medical care is provided.
Would it be fair to call this being "treated-to-death"?

    And would it be correct to say that something less than 50%
of patients who die in hospitals were "treated-to-death"?

IV. FULFILLING SAFEGUARDS WHEN MAKING LIFE-ENDING DECISIONS.

    Most life-ending decisions are made
without any explicit reference to "safeguards".
Implicit safeguards underlie all medical decisions.
But should we make safeguards more explicit
so that some hasty deaths can be avoided?

    Would it be wise to insist on some explicit use of safeguards
in all life-ending decisions?
Applying safeguards need not be a complicated bureaucratic process.
But those who are deciding that this human life is now at an end
should employ some safeguards of their own choosing
to assure themselves as deeply as they wish
that the death they are considering
will be a wise and timely death,
not a foolish, rushed, or premature death.

    One way to apply safeguards to all life-ending decisions
would be to create a new law against causing premature death.
Then everyone would know that fulfilling the stated safeguards
would protect them from any suspicion of causing a premature death.

    Here are 26 recommended safeguards for life-ending decisions:
http://www.tc.umn.edu/~parkx032/SG-A-Z.html
These are conveniently named for the letters of the Roman alphabet—A-Z.
Thus those who are discussing which safeguards would be most appropriate
can refer to them by their letters in the list above.
Each recommended safeguard is linked to a full explanation.
The details for applying each safeguard
would be especially important for people
who are making a life-ending decision for the very first time.

V. PUBLIC AWARENESS OF THE PRINCIPAL SAFEGUARDS.

    If and when safeguards are routinely used
when life-ending decisions are being considered,
then the general public will become more familiar with them.
Safeguards will cease to be the private possessions
of the medical and legal professions.

    And when public safeguards are explicitly applied,
everyone involved can be more assured that this death was wisely chosen,
rather than having recurring doubts
that some additional medical treatments could have been tried.

    When some cases of the right-to-die are made public by the media,
then everyone can discuss the most appropriate safeguards.
This did not occur in the case of Terri Schiavo.
There was no public discussion of safeguards.
People just lined up on one side of the case or the other.
Discussing safeguards would have made the right-to-die debate
more rational and principled.
And public discussion of safeguards for life-ending decisions
would have helped us all to consider just how such safeguards
might apply to our own terminal care.

    One example of a safeguard would be consulting an ethics committee.

    Applying public safeguards does not mean
that individual medical decisions for every patient is public information.
On the contrary, medical decisions should be kept private
among the deciders except in the unusual situation
where there is some question of a harm being visited upon the patient,
when law-enforcement authorities can examine all medical records.

For further exploration of this principle, read:
"Open Safeguards Kept Private":
http://www.tc.umn.edu/~parkx032/SG-OPEN.html.

VI. RIGHT-TO-DIE LAWS THAT PERMIT THE USE OF LIFE-ENDING DRUGS
       BRING THEIR SAFEGUARDS TO BEAR ON
       ONLY A TINY PROPORTION OF ALL DEATHS.

    In the first 10 years of operation of the Oregon Death with Dignity Act,
only about 1 death in 1,000 in Oregon took advantage of this law.
This means that the safeguards embodied in the Oregon DDA
are being applied to much less than one percent of all deaths in Oregon.

    New laws that prohibit causing premature death
would apply to all deaths with a meaningful element of choice.
And as estimated above, this would be about half of all deaths in the USA,
more than one million deaths per year.

    Until such laws come into effect, we have no way to knowing
how many of the chosen deaths were premature.

    Opponents of the right-to-die might better spend their efforts
improving routine deaths in hospitals and nursing homes
rather than working against laws allowing life-ending chemicals,
which are going to apply to much less than 1% of all deaths anyway.
They might shift from opposing efforts to ensure the right-to-die
to working against hasty decisions in hospitals and nursing homes
that do actually result in premature deaths.

VII. USING PUBLIC SAFEGUARDS FOR LIFE-ENDING DECISIONS
        FOR ONE MILLION DEATHS EACH YEAR.

    Perhaps the best way to acknowledge that we already have the right-to-die
is to bring the process of making life-ending decisions more into the open.
If we are already using implicit safeguards for routine deaths,
what harm would follow if we made these safeguards explicit?

    When no clear medical decision emerges easily from the facts,
then more safeguards can be employed to help reach a wise decision.
If we already have a set of public safeguards ready to be used,
then all who must decide will know where to turn
in order to achieve more clarity for the situation at hand.

    And the sometimes-ambiguous legal situation would also be resolved:
If all appropriate safeguards were fulfilled,
then there would be no adverse legal fall-out
for anyone who participated in the process
of making any wise end-of-life medical decisions.

    Here is a list of 26 recommended safeguards
which might be named in any new laws against causing premature death.
When the most appropriate safeguards have been fulfilled,
all can be assured that the chosen death was not premature.
Such safeguards could be used in the one million deaths
each year in the USA that involve some meaningful element of choice.
And eventually the best safeguards could be used world-wide.

Created 2-3-2008; Revised 2-7-2008; 2-13-2008; 2-14-2008; 2-23-2008; 3-3-2008;
6-16-2009 (when this essay also became a cyber-sermon of the same name: CY-1MILL);
1-3-2010; 11-18-2010; 1-3-2011; 4-5-2011; 11-23-2011; 1-6-2012

Go to the Safeguards Website.

AUTHOR:

James Park is an independent existential philosopher
with deep interest in end-of-life issues.
Much more information about him will be found on his website
—An Existential Philosopher's Museum:
http://www.tc.umn.edu/~parkx032/

Here are a few related cyber-sermons by James Park:

Pulling the Plug:
A Paradigm for Life-Ending Decisions .

Losing the Marks of Personhood:
Discussing Degrees of Mental Decline .

Advance Directives for Medical Care:
24 Important Questions to Answer .

Fifteen Safeguards for Life-Ending Decisions .

The One-Month-Less Club:
Live Well Now, Omit the Last Month .

Choosing Your Date of Death:
How to Achieve a Timely Death
—Not too Soon, Not too Late .

Choosing Your Own Pathway towards Death .

Completed Life or Premature Death?

One Million Chosen Deaths per Year?

Taking Death in Stride .

Four Differences between Irrational Suicide and Voluntary Death .

Four Differences between Mercy-Killing and Merciful Death .

Merciful Death for Alzheimer's Patients

Voluntary Death by Dehydration:
Why Giving Up Water is Better than other Means of Voluntary Death .