Memorandum by the Association of Hospice
and Palliative Care Chaplains
The Association of Hospice Chaplains and Palliative
Care Chaplains and the College of Health Care Chaplains recently
held meetings at which the Assisted Dying for the Terminally Ill
Bill was discussed. Both groups felt it important to respond to
the Bill.
The Assisted Dying for the Terminally Ill Bill,
is an attempt to address the experience of patients living with
pain and distress. As chaplains working in hospitals and hospices
we have much experience of patients and families living with very
real and genuine pain and distress. As members of the multi-professional
team we know that many staff also experience pain and distress
in caring for patients and their families.
We are unable to support this Bill because:
— Whilst we acknowledge that the Bill
is based on the experience of patients it is based on the experience
of a limited number of patients. A number of patients are greatly
helped in their pain by the provision of holistic palliative care,
which can so often enable people to re-evaluate their feelings
and give hope for the life that they are still able to live.
— Many patients living with an irremediable
condition feel extremely vulnerable because they are facing death
and can feel they have little or no control over what happens
to them. We feel that this sense of vulnerability could lead to
patients making ill-informed decisions under a perceived pressure
to relieve the stress of those close to them, and not to be a
burden to the team of health care workers looking after them.
— The criteria and words used in the
Bill are too subjective and will lead to a variety of interpretation
that will be impossible to check and verify. Given that the unbearable
suffering depends upon the patient self-reporting the way could
be open for assisted death on demand.
— It is unacceptable that physicians
or any profession should be given the power to assist anyone to
actively end their life. This would be an unacceptable change
of role for those working as health care providers.
— We believe that patients who consider
they are experiencing unbearable suffering should experience holistic
palliative care in order to give them the best quality of care
that can be given to them and their families and those close to
them.
— The Bill seems to indicate that palliative
care is an only an alternative and not as many of use believe
integral part of the National Health Service. It surely is the
right of all patients with a life limiting disease to be provided
with proper palliative care.
— If some physicians in hospices and
hospitals were legally able to assist patients in dying it would
fundamentally change the purpose of both institutions.
— If physicians can choose to not take
part in assisted dying, the Bill places a duty on the physician
to find someone who will assist the patient, surely this is an
impossible burden on them?
— The whole notion that physicians
can estimate how long before a terminal illness is likely to result
in death is one fraught with difficulty. Most physicians are most
reluctant to put a time frame on any terminal illness.
The Assisted Dying for the Terminally Ill Bill
raises for us the following issues:
— The Bill states that patients, following
a process outlined in the Bill, will be able to request the assistance
of a physician in order to die (clause 1:1). However, many patients
living with an irremediable condition will have been cared for—not
just by a physician—but by a multi-professional team within
a hospice or hospital unit. The knowledge that the physician and
other members of the team (Clause 10:2) may assist a patient to
die could compromise their relationship with the rest of the team
who do not agree that a patient should be assisted to die. The
relationship of the team with other patients could also be compromised,
as patients could be anxious or confused as to the nature of care
being offered. Patients and families frequently talk with each
other about their illness and the care they are receiving.
— A number of words and phrases within
the Bill are open to subjective interpretation such as "unbearable
suffering." (clause 2:2,d) and "terminal illness"
The interpretation of "unbearable suffering" could vary
from physician to physician and case to case. Patients may suffer
unbearably in ways other than physical pain. The term "terminal
illness" is used in the Bill for when a physician has given
a prognosis of death within a few months. We know that so often
such time scales prove to be wrong and more physicians seem reluctant
to give them.
— Physicians may not be the appropriate
people to make decisions on the criteria of suffering unbearably.
It is our experience that patients, due to a number of factors,
can frequently change their views as to how they feel; this can
happen on a daily basis or even hour by hour.
— Physical pain is implied as a major
criterion (clause 2:2,d) contributing to a patient qualifying
to request assistance to die. However, patients can experience
emotional, social and spiritual pain. As the concept of "pain"
is open to interpretation this criterion could change.
— Active employment of physical pain
control and palliative care is only mentioned as an "alternative"
(clause 2:3,e) or that patients are "entitled to request
. . . such medication" (clause 15). Patients should be strongly
encouraged to experience the range of pain control and palliative
care available to them and which should not be seen as alternative
care, or something a patient has to request.
— The process set out in the Bill in
order for a patient to "qualify" for assistance in dying
has several stages: ensuring that a patient has made an informed
decision, alternatives have been discussed and the patient's wishes
to revoke their decision. This will be a lengthy process that
physicians may feel they do not have adequate time to fully resource.
— The patient is recommend to inform
their next of kin if they have taken a decision to be assisted
in their death (clause 9). Next of kin and families could experience
many strong emotions when they know that such a decision has been
taken. The family could need support from the multi-professional
team. This would require a team who supported assisting patients
in dying and who will have time to spend with families and friends.
We would wish the following to be considered:
— Physicians who are prepared to assist
patients to die could find that the relationship of trust that
they have developed with both patients and other professionals
may be compromised due to the "power" that they could
be seen to have in assisting a patient to choose to die.
— A patient who considers that they
are a burden to their family may feel under pressure to request
assistance in dying.
— When a patient has taken a decision
to request assistance in dying they may find it difficult to revoke
the decision for a variety of reasons.
— The decision of what is and what
is not unbearable suffering is too complex for any professional
to judge. The Bill does not sufficiently address how this is to
be interpreted.
— There is no acknowledgement as to
the impact on family and friends, and the effects on other staff
and units as a whole.
— There is little research into patients'
decision making at the end of their life. Before this Bill was
to become law more research in this area would be required.
— There is a need for a robust debate
in regard to physician assisted suicide and euthanasia. There
exists a great deal of interest in these matters and society as
a whole needs an opportunity to debate these matters.
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