THE HOSPICE COOPERATION PROJECT

SEEKING BETTER COOPERATION BETWEEN
THE HOSPICE MOVEMENT
AND THE RIGHT-TO-DIE MOVEMENT


OUTLINE:

I. BACKGROUND FACTS ABOUT HOSPICE AND THE RIGHT-TO-DIE

II. SOME QUESTIONS FOR PERSONS INVOLVED IN BOTH MOVEMENTS

III. HOW HAVE HOSPICES IN OREGON AND WASHINGTON
RESPONDED TO THE DEATH WITH DIGNITY ACT?

IV. COOPERATION NOT CONFRONTATION

V. HOW WOULD THE HOSPICE PROGRAM YOU KNOW BEST
RESPOND TO ANY LIBERALIZATION OF LAWS
WITH RESPECT TO THE RIGHT-TO-DIE?

VI. LINKS TO MORE INFORMATION


THE HOSPICE COOPERATION PROJECT

SEEKING BETTER COOPERATION BETWEEN
THE HOSPICE MOVEMENT
AND THE RIGHT-TO-DIE MOVEMENT

by James Leonard Park

    The hospice movement and the right-to-die movement have different historical roots.
But in the 21st century, we might see convergence of these two movements,
beginning with ever better cooperation between them.

    The Hospice Cooperation Project
will seek the common ground in caring for the dying
that can serve as a basis for better cooperation between these two social movements.

    We can begin by gathering information from individuals
who are involved in both movements.

    Perhaps the practices and philosophy of the hospice movement
are converging with practices and philosophy of the right-to-die movement.

    Do you agree with the following statements of our two philosophies?

    Hospice philosophy and practice seeks to help dying persons
have a peaceful and pain-free last few weeks or months of life.

    Right-to-die philosophy and practice seeks to help dying persons
to choose the best pathways towards death for themselves.

    If these two approaches to dying are really this close,
why not seek closer practical cooperation between our two movements?


I. BACKGROUND FACTS ABOUT HOSPICE AND THE RIGHT-TO-DIE

    Medicare already pays a generous amount of cash for each day of hospice care.
The exact amount depends on how much care is needed and where that care is given.
And most other forms of health insurance also have a hospice benefit.

    Hospice care can be given in any of the following forms and settings:

(1) Hospice care can be given at home
by volunteers and professionals who visit the patient at any residential location.

(2) Hospice care can be given at a free-standing residential facility.
In this case, the patient is moved to a bed in the hospice building.

(3) Hospice care can be given within another kind of health-care institution,
such as a nursing home or a hospital.
In such cases, the hospice care might be in a separate wing or ward.

(4) Or the hospice care can be given within the same nursing services
which are also caring for patients who are expected to recover.
In this case, the patient does not have to be officially declared to be terminally ill.
And the nursing care can gradually shift
from attempting to cure the disease
to comfort-care for the patient who is acknowledged to be dying.
In this case, the medical care might not be called hospice care.

    The right-to-die movement also has several forms and settings
in which to serve individuals in the last days of their lives.

    For example, the End-of-Life Consultation of Compassion & Choices
helps persons who have terminal illnesses in several ways.
Here is the national website of Compassion & Choices:
http://compassionandchoices.org.

    One sign of the convergence of the practices of the hospice movement
and this part of the right-to-die movement
was disclosed in the 2005 Annual Report of Compassion & Choices.
Nation-wide 87% of clients served by the Compassion & Choices
were also "on hospice" at the time of their deaths.
(See page 9 of the 2005 annual report.)
This percentage has continued to be similar is more recent years.
Most of these dying individuals receive help both from C&C
and from their local hospice provider.

    This suggests that there is already considerable cooperation
between the organizations paid to give terminal care
and the population of dying persons
who seek the help of Compassion & Choices. 


II. SOME QUESTIONS FOR PERSONS INVOLVED IN BOTH MOVEMENTS

    Is it correct to assume that operating hospices
must be very cautious about their public image?
Even if they do permit the full range of legal options at the end of life,
perhaps they do not officially want to discuss their openness
to the more liberal and perhaps controversial choices for the end-of-life.

    Here is the website of the Minnesota Network of Hospice and Palliative Care (MNHPC)
(formerly called Hospice Minnesota),
which is an umbrella organization for hospice programs operating in Minnesota:
http://mnhpc.org/

    Their website currently states their official position against
what they call "euthanasia" and "physician-assisted suicide":
http://mnhpc.org/wp-content/uploads/2010/04/EOL_Decisions_revised3.pdf

    But this statement was revised in 2007 to allow discussion
of end-of-life options which are not yet legal in Minnesota.
And no patient will be turned away because he or she wishes
to discuss choosing a voluntary death or a merciful death.

    Two of the four legal options for shortening the process of dying
are explicitly named in the MNHPC position statement entitled:
"Statement on Assisted Suicide, Physician Assisted Suicide, and Euthanasia".
These are (1) increasing pain medication with the knowledge
that such a course of treatment might shorten the process of dying
and (2) refusing or withdrawing any medical treatment.

    If you would like to be reminded of the legal options
now available everywhere in the United States, here is an outline:
"Four Legal Means to Choose a Voluntary Death or a Merciful Death":

1. Increasing Pain Medication.

2. Terminal Sedation.

3. Withdrawal of Life-Support Systems.

4. Voluntary Death by Dehydration.

    Here is full text of this essay:
http://www.tc.umn.edu/~parkx032/CY-L-END.html

    Even tho the MNHPC statement against active help in dying
does not mention terminal sedation (sometimes called "palliative sedation")
or voluntary death by dehydration (sometimes called "stopping eating and drinking"),
there is no explicit prohibition of either of these end-of-life options.

    Which hospice programs in Minnesota already have experience with terminal sedation?
To be explicit, terminal sedation means using drugs
to keep the patient completely and continuously unconscious until natural death occurs.
Terminal sedation almost always includes termination of all life-supports,
including food and water provided by any means.

    Which hospice programs in Minnesota have experience with terminal dehydration?
Voluntary death or merciful death by dehydration
means giving up all food and fluids with the explicit knowledge that death will result.
Professional hospice care for patients who have chosen this pathway towards death
should include all available means of preventing
the uncomfortable side-effects of voluntary death by dehydration.
For more information about this life-ending option, visit a website called
"Voluntary Death by Dehydration—Questions and Answers":
http://www.tc.umn.edu/~parkx032/VDD-Q&A.html.

    If you have any experience with hospice programs anywhere in the world,
as a board member, staff member, volunteer, or family of a client:
What end-of-life options are offered?
Does the hospice program you know best
encourage or discourage any of the options mentioned above?
Does the 'culture' of any particular hospice program
makes it easy to ask for liberal end-of-life options?
Would the hospice program you are most familiar with
be a good option for people who wish to exercise their right-to-die?

    If the hospice you know best
was established by some religious organization
or is staffed by employees and/or volunteers
who predominantly come from one religious tradition,
how does this affect what actually happens within that program?

    Would the hospice program you know best
resist getting a reputation for allowing liberal end-of-life choices?
They might worry that allowing terminal sedation, for example,
might discourage potential clients who would never consider such an option.

    Does the hospice program you know best
have any written policies concerning what will be permitted
and what will not be permitted under that program?
And beyond any written policies,
what has actually happened in the last days of clients
who were enrolled in that program?

    Perhaps different hospice board members, staff members, & volunteers
operating within the same hospice program
have different philosophies and different practices.
If this is so, how do clients discover the most appropriate helpers
—those staff members and volunteers
who are most in-tune with the client's philosophy of living and dying?

    For example, if the official philosophy is that there will be no practice
that either lengthens or shortens the process of dying,
are there some individuals who will 'look the other way'
when a client or proxy chooses to shorten the process of dying?
Or if the official policy says that there will be no 'aid in dying',
have some doctors, nurses, chaplains, volunteers, etc.
cooperated in deaths that might be close to helping patients to die?


III. HOW HAVE HOSPICES IN OREGON AND WASHINGTON
RESPONDED TO THE DEATH WITH DIGNITY ACT?

    So far, Oregon and Washington are the only states in the United States
to enact laws that empowers dying patients
to choose to shorten their process of dying.
The Oregon Death with Dignity Act and the Washington Death with Dignity Act
allow terminally-ill patients to request life-ending chemicals
for the purpose of achieving a peaceful and painless death.
There are careful safeguards in place
to prevent mistakes and abuses of this system of choosing death.

    How have hospice programs operating in these states
changed their operating philosophies and practices
in response to these new laws?
Perhaps some hospice programs are more cooperative than others.
The laws do not require health-care providers
to cooperate with the Death with Dignity Act.
Doctors, nurses, & others can opt-out of any practice
with which they have philosophical or religious disagreements.

    Because the Oregon Death with Dignity Act
has been in effect since the middle 1990s,
most hospice programs in Oregon have probably
learned how to cooperate with any patient
who chooses to take life-ending chemicals.
The new law in Washington State came into effect in July 2009.
Have long-established hospice programs in Washington state
cooperated with the new right-to-die law and procedures?

    Applying for death with dignity should not mean
that the client will be excluded from any hospice program
or expelled from any program in which he or she was already enrolled.

    {Further information about hospice cooperation in Oregon and Washington
will be included here or linked from here.
Please provide any additional information you have.}


IV. COOPERATION NOT CONFRONTATION

    As stated in the title of this project,
we are seeking greater cooperation
between the hospice movement and the right-to-die movement.
Neither movement needs to change its philosophy or practices to suit the other.
But we might be able to find common ground on which to cooperate.

    Each hospice program is an independent organization
or part of a health-care system that is independent.
This project of gathering information
does not seek to change the philosophy or practices of any hospice program.

    However, when other states besides Oregon and Washington
propose to change their laws with respect to the right to die,
this will be an opportunity for each hospice program
to decide to favor, oppose, or remain neutral with respect to the proposed legislation.

    And if a change of law is actually enacted,
then each hospice program in the affected states will have to decide
how to respond to any new pathways towards death
that have been opened by new laws.

    As happened in Oregon and Washington,
any new laws in other states
are likely also to include provisions
allowing any health-care personnel and/or institutions
(including hospice programs)
to opt-out of any practices authorized by new laws.
Each hospice program would remain in charge of its own philosophy and practices.


V. HOW WOULD THE HOSPICE PROGRAM YOU KNOW BEST
RESPOND TO ANY LIBERALIZATION OF LAWS
WITH RESPECT TO THE RIGHT-TO-DIE?

    Would the hospice program you are most familiar with
readily revise its philosophy and practices
to allow their clients to obtain and use chemicals
that would bring their lives to an immediate, peaceful, & painless end?
How would the hospice program you know best
respond to this new option for shortening the process of dying?

    Or even earlier, would the hospice program you know best
resist any such change in state law?
Or would the hospice program remain neutral about liberalizing laws?
Perhaps in order not to alienate main-stream clients,
the hospice program would not take any stand
concerning whether laws should be revised
to permit patients to end their lives
in wise ways that have been discouraged in the past.

    The official position of the Minnesota Network of Hospice and Palliative Care says:
"Hospice Minnesota encourages ongoing discussion and debate
of the issues surrounding end-of-life decision making,
including assisted suicide and euthanasia."
http://mnhpc.org/wp-content/uploads/2010/04/EOL_Decisions_revised3.pdf

    Probably some people involved in the hospice program you know best
would be in favor changing Minnesota law to allow more active help in dying.
And some people would be opposed.
What are the proportions in your estimation?
The citizens of Oregon ultimately voted 60/40 in favor of their present law,
which allows voluntary death.
And the voters of Washington State voted 59/41 in favor of their new law.
The citizens of your part of the world might be more equally divided on this issue.
How would the hospice workers you know divide themselves on this question?


   If you have any thoughts or experiences
that might be relevant to this Hospice Cooperation Project,
send your response to me, James Park, by e-mail:
PARKx032@TC.UMN.EDU
Your responses can be added to this website
and linked from this opening page.


VI. LINKS TO MORE INFORMATION

{More information will be published here when it becomes available.}
Created April 3, 2006; revised 9-22-2007; 11-21-2008; 3-12-2011; 3-13-2011

Full-Spectrum Hospice

Proposed Policy Statement on End-of-Life Options

    This is a proposed policy statement for a hospice program
that chooses to offer the full-range of legal choices at the end of life.


Hospice doctors decide to remain neutral on the question of physician aid-in-dying.

    In 2007, the American Academy of Hospice and Palliative Medicine
revised its official position concerning
what hospice and palliative care physicians should do
when asked by patients for help in dying.


Go to the Right-to-Die Portal.
The views and opinions expressed in this page are strictly those of the page author.
The contents of this page have not been reviewed or approved by the University of Minnesota.