Safeguards
for Making Life-Ending Decisions
in a Right-to-Die Hospice Program
SYNOPSIS:
The first hospice that explicitly permits
patients to choose death
must have safeguards that are even more careful and
comprehensive
than the implicit safeguards already used in normal terminal care.
Whatever safeguards are adopted should be published
prominently
on the website of each right-to-die hospice program.
This will empower patients and their proxies to begin fulfilling
safeguards
even before they apply for admission to a hospice program.
Fulfilling safeguards involves gathering the opinions of several
people.
These explorations might uncover new perspectives
that will encourage patients to postpone their original plans for death.
Such a go-slow impact of the safeguards will not mean
that patients should abandon
their original
end-of-life plans.
Rather, the safeguards detailed below should empower
patients and their proxies to make their life-ending decisions
even more carefully than if they have followed their
first inclinations.
OUTLINE:
A. ADVANCE
DIRECTIVE
FOR MEDICAL CARE
B.
REQUESTS
FOR
DEATH FROM THE
PATIENT
C.
PSYCHOLOGICAL
CONSULTANT EVALUATES
THE
PATIENT'S ABILITY TO MAKE MEDICAL DECISIONS
D.
PHYSICIAN'S
STATEMENT
OF CONDITION AND PROGNOSIS
E.
INDEPENDENT
PHYSICIAN
REVIEWS
THE CONDITION AND PROGNOSIS
F.
CERTIFICATION
OF TERMINAL ILLNESS OR INCURABLE CONDITION
G. UNBEARABLE
SUFFERING
H.
UNBEARABLE
PSYCHOLOGICAL SUFFERING
I.
PALLIATIVE
CARE
TRIAL
J.
INFORMED
CONSENT FROM THE PATIENT
K. REQUESTS
FOR
DEATH
FROM THE PROXIES
L. ENROLLMENT
IN A
HOSPITAL OR HOSPICE
M.
STATEMENTS
FROM
HOSPITAL OR HOSPICE STAFF MEMBERS
N.
STATEMENTS
FROM FAMILY
MEMBERS
AFFIRMING
OR
QUESTIONING CHOOSING DEATH
O.
A
MEMBER
OF THE
CLERGY
APPROVES
OR QUESTIONS CHOOSING DEATH
P.
RELIGIOUS
OR OTHER MORAL PRINCIPLES
APPLIED
TO THIS
LIFE-ENDING DECISION
Q.
AN
INSTITUTIONAL
ETHICS COMMITTEE
REVIEWS
THE PLANS FOR DEATH
R.
STATEMENTS
FROM
ADVOCATES FOR
DISADVANTAGED GROUPS
IF
INVITED BY
THE PATIENT AND/OR THE PROXIES
S. REVIEW
BY THE
PROSECUTOR (OR OTHER LAWYER)
BEFORE
THE DEATH
TAKES PLACE
T. CIVIL
AND
CRIMINAL PENALTIES
FOR
CAUSING PREMATURE DEATH
U. WAITING
PERIODS FOR REFLECTION
V.
OPPORTUNITIES
FOR THE PATIENT TO RESCIND OR POSTPONE
ANY
LIFE-ENDING
DECISIONS
W. PHYSICIANS
REVIEW
THE
COMPLETE DEATH-PLANNING RECORDS
X. COMPLETE
RECORDING AND SHARING
OF
ALL MATERIAL FACTS AND OPINIONS
Y. THE
PATIENT MUST BE CONSCIOUS
AND
ABLE TO ACHIEVE DEATH
Z. THE
DEATH-PLANNING COORDINATOR
ORGANIZES
THE SAFEGUARDS
Safeguards
for Making Life-Ending Decisions
in a Right-to-Die Hospice Program
by
James Leonard Park
Each of the following safeguards for life-ending decisions
is linked to a more complete (and general) explanation on the Internet.
Questions about applying each safeguard to a particular patient
can be answered by reading the full account.
A. ADVANCE
DIRECTIVE
FOR MEDICAL CARE
A patient applying for the services of a
right-to-die hospice
might have created an Advance
Directive for Medical Care years
beforehand.
Any such document should be reviewed in light of the
end-of-life situation.
Special attention should be given to the Questions about the
right-to-die.
If the patient has no prior Advance Directive,
such a document should be created whenever possible.
This might be shorter than a comprehensive Advance Directive,
since the focus will be the end-of-life processes now being
discussed.
A very important element of any Advance Directive
is appointing proxies
who will carry forward the wishes of the patient
if and when the patient becomes unable
to affirm or enforce the medical choices already made
or any end-of-life decisions that must be made in the future.
The chosen proxies should affirm their willingness
to carry forward the plans explained in the Advance Directive.
B.
REQUESTS
FOR
DEATH FROM THE
PATIENT
If the patient is still able to make wise medical
decisions,
then his or her plans should be included in the application
for admission.
Does this patient plan to use the services of the right-to-die hospice
for the purpose of choosing a wise and timely death?
Or is the patient seeking admission with a plan to receive palliative
care
until such time as it become more reasonable to choose death?
In other words, is the patient making an explicit
request for death
as a part of the process of being admitted to this hospice?
Or is the option of choosing death merely one of the possibilities
the patient has in mind in requesting hospice help?
All end-of-life plans should refer to the
medical situation
that is leading to hospice admission.
C.
PSYCHOLOGICAL
CONSULTANT EVALUATES
THE
PATIENT'S ABILITY TO MAKE MEDICAL DECISIONS
Each right-to-die hospice should require a
psychological evaluation
at some time in the process of making end-of-life decisions.
So it might be wise for the patient and/or the proxies
to select their own psychological expert who will provide a written
opinion
about the psychological issues that should be addressed at the
end of life.
If no psychological evaluation had been
conducted beforehand,
such an interview (or interviews) should be arranged after admission.
And this written report of the patient's reasons for requesting death
and any other relevant psychological matters
should be included in the
death-planning record.
D.
PHYSICIAN'S
STATEMENT
OF CONDITION AND PROGNOSIS
The most important medical document presented for
admission
is the physician's summary of the condition and prognosis of the
patient.
If relevant, the doctor could also include specific medical records
that support the conclusions summarized in this statement.
If the primary-care physician does not support
admission to hospice,
then another physician, perhaps already associated with the hospice,
will be called upon to do an independent examination of the patient
and to issue a written statement of the patient's condition and
prognosis.
With the patient's explicit permission,
this hospice doctor will have access to any and all medical records
accumulated over whatever period of years might be relevant.
And the summary statement by this doctor will state clearly
exactly which medical records were consulted.
E.
INDEPENDENT
PHYSICIAN
REVIEWS
THE CONDITION AND PROGNOSIS
If the hospice is considering bringing this
patient's life to an end,
a second professional opinion by a licensed physician must be obtained.
This second doctor will also examine
the patient in person
as well as review all of the most relevant medical records
and the written evaluation of the first physician (Safeguard D).
Any questions and differences of professional
recommendations
must be resolved before any plans for death are carried forward.
F.
CERTIFICATION
OF TERMINAL ILLNESS OR INCURABLE CONDITION
The two written statements from independent doctors
mentioned above
will probably include some references to the likely life-span of the
patient
under various medical options that might still be relevant.
The hospice program need
not require a terminal diagnosis.
It would be sufficient to show that the patient has an incurable condition
that is serious enough to justify a life-ending decision.
This safeguard will also be fulfilled by physicians
who have personally
examined the patient
and conducted whatever medical tests might be relevant.
Fulfilling this terminal-illness safeguard will make
certain
that the complete condition of the patient has been explained
in writing
by medical professionals who have all of the required background
to make informed recommendations concerning this patient.
G.
UNBEARABLE
SUFFERING
The suffering of the patient (as experienced by the
patient)
shall be a recorded part of the death-planning record.
The medical record of the patient will probably show
past attempts to alleviate each specific form of suffering.
The level and degree of the patient's suffering
might be one of the most important reasons for seeking hospice
care.
Often such suffering is merely implicit.
So it would be important for each kind of suffering
that can be
understood by medical science
to be documented and explained by a medical professional.
But the most important account of suffering comes
from the patient.
The comfort-care normally provided by the hospice
program
might have some impact on the suffering of the patient.
And this might postpone
the original plan for an immediate death.
If the patient can be made comfortable enough to endure another day,
then there is no need to end the patient's life today.
Caution should be encouraged whenever possible.
H.
UNBEARABLE
PSYCHOLOGICAL SUFFERING
The suffering of the patient might have
psychological components.
And the suffering might even be primarily
psychological.
If so, this inward suffering will also be evaluated
in whatever ways are possible for psychological investigation.
The official deciders (either the patient or the
proxies)
will take any psychological suffering into account
in making their final decisions about this patient.
And it will strengthen their case if they show
that many methods of psychological healing have already been tried.
I.
PALLIATIVE
CARE
TRIAL
As a part of the medical history of this patient,
there will probably be some recorded attempts to cure suffering.
If not, then such an actual trial of methods of solving suffering
should be applied before any decisions about death are made.
When it becomes clear that palliation of
suffering
will not succeed well enough to convince the patient to continue living,
then the patient can begin to discuss the best pathway towards death.
And all palliative care that has proven effective should
continue.
Even when attempts to cure the patient have been
given up,
methods of providing comfort and pain-relief should always continue.
J.
INFORMED
CONSENT FROM THE PATIENT
The well-confirmed consent of the patient is basic
to any hospice care.
Are the well-considered wishes of the patient uppermost?
Has the patient given explicit consent for admission to this
hospice program?
Has the patient selected the best
medical
methods of managing
dying?
And if the patient is no longer fully able to give
informed consent,
then are the duly-authorized proxies giving consent for their patient?
K.
REQUESTS
FOR
DEATH
FROM THE PROXIES
When the patient has lost the power to make medical
decisions,
including any choices that will bring his or her life to an end,
then this deciding-power shifts to the proxies,
who were duly authorized beforehand by the patient.
The proxies then have the same end-of-life powers
previously held by the patient.
Within a right-to-die hospice, the right to
choose death
does not come to an end
when the patient becomes unconscious
or otherwise unable to express or enforce the life-ending decisions.
The prior wishes of the patient, as interpreted by the proxies,
have the same force as the patient
taking a life-ending action by his or her own hands.
If and when the proxies make life-ending decisions,
let these choices be put into writing with proper witnesses.
L.
ENROLLMENT
IN A
HOSPITAL OR HOSPICE
The complete medical records of the patient
will probably show some years of medical care
provided by doctors, hospitals, and perhaps another hospice
program.
A simple list of such past medical care
could be added to the death-planning record.
This will show that there are real medical reasons
behind the plans for death now being brought to completion.
If there are no such records of enrollment,
then sufficient explanation should be provided,
showing why this safeguard does not apply to this patient.
M.
STATEMENTS
FROM
HOSPITAL OR HOSPICE STAFF MEMBERS
To make the death-planning record more complete,
statements should be collected from the nurses and volunteers
who have daily contact with the patient.
This part of the background for making life-ending decisions
has usually not been documented
---perhaps because persons with less formal responsibility
are not expected to have relevant opinions.
But if these others persons also agree with the plans for death,
then there will be less possibility of second-guessing by strangers.
N.
STATEMENTS
FROM FAMILY
MEMBERS
AFFIRMING
OR
QUESTIONING CHOOSING DEATH
Written statements should also be collected from
family members,
especially those most closely involved with the recent life of the
patient.
These people who will be involved in the last days of the patient
might have a variety of views about the whole process.
And the doubts and worries of any who question the plans for death
should be addressed before any plans are carried forward.
A written summary of such deliberations might be appropriate.
O.
A
MEMBER
OF THE
CLERGY
APPROVES
OR
QUESTIONS CHOOSING DEATH
If the patient has any religious connections at the
end of life,
then it might be relevant to call upon a leader of that organized
religion
to review and comment on the end-of-life process.
Religious leaders usually do not endorse life-ending decisions
they feel are contrary to their religious beliefs.
This is a optional
safeguard,
since not everyone has
a relevant religious connection.
But it would be additional proof that all due care was used
in making the life-ending decisions for this patient.
The clergy-person should create a written statement
of opinion,
but this document (like all of the other safeguard documents)
will not become public.
The fact that the life-ending decisions were reviewed by a
religious leader
could be disclosed to the media and the public,
but there is no obligation to submit such documents to
strangers.
P.
RELIGIOUS
OR OTHER MORAL PRINCIPLES
APPLIED
TO THIS
LIFE-ENDING DECISION
Another, related, optional safeguard seeks
a
written expression of religious doctrine
as applied to the end-of-life situation at hand.
Not all dying patients want an explanation of religious or
moral principles.
But those who are concerned about such matters
should be helped by the hospice staff to get their
religious leaders
to prepare such statements to be included in the
death-planning record.
As already said, this is an optional safeguard.
But if used, it will strengthen the claim that these
life-ending decisions
were achieved with careful consideration of all relevant
perspectives.
Q.
AN
INSTITUTIONAL
ETHICS COMMITTEE
REVIEWS
THE PLANS FOR DEATH
If the patient has been receiving medical care
in any institution that has an established ethics committee, then
perhaps
that committee has already reviewed this patient's
end-of-life situation.
If so, then any such written committee recommendation
should be included in the death-planning record.
The right-to-die hospice itself might have an ethics
committee,
which will deal with the most difficult end-of-life decisions.
If most of the other safeguards have already been fulfilled,
then this committee might mainly review the death-planning record.
But whenever possible, the ethics committee should meet with the
patient.
All questionable plans for death should be reviewed in advance
by neutral committees of experts drawn from various disciplines.
R.
STATEMENTS
FROM
ADVOCATES FOR
DISADVANTAGED GROUPS
IF
INVITED BY
THE PATIENT AND/OR THE PROXIES
When a patient requests the services of a
right-to-die hospice,
there is probably no reason to suspect some lower level of care.
But if this might be a valid worry,
then some person from the same identity-group as the patient
might be invited to review the plans for the end of this patient's
life.
S. REVIEW
BY THE
PROSECUTOR (OR OTHER LAWYER)
BEFORE
THE DEATH
TAKES PLACE
In some cases, there might be valid reasons
to
wonder about the legality
of the plans for death.
When legal minds might differ about the life-ending decisions,
then it will be wise to ask lawyers and prosecutors before the death
to review the plans to see if they fall within all applicable
laws.
Especially if legal professionals might become involved after the
death,
it is much better to get their expert legal opinions
before taking the last
steps to bring this patient's life to an end.
If good legal advice approves of the plans for death
---and especially if the public prosecutor agrees---
then all can proceed without fear of legal problems.
T. CIVIL
AND
CRIMINAL PENALTIES FOR CAUSING PREMATURE DEATH
No matter what policies and procedures the hospice
adopts,
there will always be the background facts of the law in that
jurisdiction.
Civil and criminal sanctions will remain possible
if any life-ending decision proves to have been made in error.
The hospice should have a
written summary of all relevant laws,
which can be shared with anyone who has doubts
about the legality of the life-ending decisions being considered.
And the hospice should be prepared to defend any and
all people
who have been involved in any life-ending decisions
taken under the authority of that hospice.
A legal-defense fund should be part of the budget.
At least at first, these will be civil and criminal complaints,
even if all of the safeguards discussed here have been carefully
fulfilled.
U. WAITING
PERIODS FOR REFLECTION
Any process that leads to the death of a human being
should be very carefully discussed and considered,
including ample time to review—and perhaps revise—earlier
decisions.
The very process of fulfilling the other safeguards discussed here
will necessarily have required meaningful periods of time.
So, it might be sufficient to summarize the amount of time
already devoted to making the end-of-life decisions for this patient.
But sometimes, it will be wise simply to delay the
proposed death
by a few days in case new facts or new thinking might emerge.
Spending enough time will strengthen the case
that this decision for death was wisely considered and reviewed.
V.
OPPORTUNITIES
FOR THE PATIENT TO RESCIND OR POSTPONE
ANY
LIFE-ENDING
DECISIONS
Having waiting periods also provides opportunities
for the patient
to re-think any plans for death.
All such opportunities should be explicitly recorded
as long as the patient is still able to make meaningful decisions.
Did the patient reaffirm the plans for death
at each and every opportunity to review?
If the patient (or the proxies) have second thoughts at any time,
these should be fully expressed and explored.
It probably will do little harm to postpone the proposed death,
especially if good palliative care is being provided.
But it might be harmful to proceed towards death too quickly.
W.
PHYSICIANS
REVIEW
THE
COMPLETE DEATH-PLANNING RECORDS
The physician in
charge of the hospice program
should review of all of the documents collected
in the process of planning for this patient's death.
Are there gaps that should be filled-in with more complete
documents?
If a lawyer or prosecutor were to look at these records in the future,
are there any deficiencies that can be corrected before death?
Has the disease or condition of the patient progressed as expected?
Or have new problems
emerged that were not originally included
in the statements from the medical professionals?
This review by the hospice medical director will be signed and dated,
proving that the utmost care was observed in closing this
patient's life.
X.
COMPLETE
RECORDING AND SHARING
OF
ALL MATERIAL
FACTS AND OPINIONS
Keeping good records of all of the deliberations and
documents
will be continuing proof that all relevant safeguards are being
fulfilled.
The various people involved in these life-ending decisions
will be completely aware of the views of everyone else involved.
And when someone raises a new question
because of something included in the death-planning record,
that question can be settled before the plans for death are
carried forward.
Y. THE
PATIENT MUST BE CONSCIOUS
AND
ABLE TO ACHIEVE DEATH
If the patient is able to participate in the final
life-ending actions,
this will be dramatic proof to distant critics
that this was really an appropriate voluntary death.
But if after some time fulfilling other safeguards,
the patient slips beyond the ability to participate in any further
decisions,
the proxies are empowered
to carry forward the plans for death.
In other words, this safeguard should never be applied with such
rigidity
that it denies the right-to-die
to a patient who has fulfilled most of the other safeguards.
Even if the patient is unconscious
at the end,
this does not prevent exercising the right-to-die.
Z. THE
DEATH-PLANNING COORDINATOR
ORGANIZES
THE SAFEGUARDS
Within the right-to-die hospice, some employee of
the hospice itself
will probably be in charge of gathering and sharing the fulfilled
safeguards.
And the hospice will want to preserve all death-planning
records.
If any later review is requested,
these organized records of all deliberations and decisions
will be immediate proof that this was a carefully-decided death.
AUTHOR:
James Park is an advocate of the
right-to-die with careful safeguards.
The most relevant links to other information
about this proposal for creating right-to-die hospices appear below.
Much more information about the author will be found
on his website.
This detailed discussion of the 26 safeguards for
life-ending decisions
as they might be used in a right-to-die hospice program
has become Chapter 48 of How
to Die:
Safeguards for Life-Ending Decisions:
"Safeguards for Making Life-Ending Decisions in a Right-to-Die Hospice
Program".
Created
November 2, 2012; Revised 11-8-2012; 11-11-2012; 11-14-2012; 12-7-2012;
1-2-2013; 1-12-2013; 3-30-2013;
4-28-2014; 5-15-2014; 7-11-2015; 12-22-2015; 12-26-2015;
1-21-2016; 10-25-2017; 9-8-2018; 11-28-2019; 10-3-2020;
Good Death Hospice
The
basic proposal for creating the world's first right-to-die
hospice.
https://s3.amazonaws.com/aws-website-jamesleonardpark---freelibrary-3puxk/GDH.html
Full-Spectrum Hospice
A
policy statement that might be used by a full-service
hospice.
https://s3.amazonaws.com/aws-website-jamesleonardpark---freelibrary-3puxk/HOS-PHIL.html
The
Hospice Cooperation Project
Encouraging better coordination between
the traditional hospice movement and the right-to-die movement.
https://s3.amazonaws.com/aws-website-jamesleonardpark---freelibrary-3puxk/HOSPICE.html
How to Die:
Safeguards for Life-Ending Decisions
This
on-line book explores all 26 recommended safeguards.
https://s3.amazonaws.com/aws-website-jamesleonardpark---freelibrary-3puxk/HTD.html