Examination of Witnesses (Questions 1711
- 1719)
FRIDAY 17 DECEMBER 2004
DR DIRK
RAYMAKERS, DR
MARIJANNE VAN
DER SCHALK,
DR ROELI
DIJKMAN, DR
MARLIES VELDHUIJZEN
VAN ZANTEN-HYLLNER,
DR TJOMME
DE GRAAS,
MS MURIËL
HOUTHUYSE and MS
HELMA HESLOOT
Q1711 Chairman: Dr Raymakers, I understand
you would like to make an introductory statement to us before
we begin.
Dr Raymakers: It is a great honour for me to
welcome you here to Sint Jacob. My name is Dirk Raymakers and
I am a nursing home physician and manager of the medical services.
Sint Jacob is a Roman Catholic house, built 140 years ago for
the care of old and poor citizens of Amsterdam. Until 1968, the
Sisters of Charity from the south of The Netherlands took care
of the patients. From that time onward, Sint Jacob was a nursing
home as well as a home for the elderly. At the moment, more than
450 people live and receive treatment here in the house. We have
wards for somatic care, psycho-geriatric care, as well as wards
for rehabilitation. We have a stroke unit and, for the last five
years, we have had a unit for palliative care—a hospice
within our home for the elderly. In front of you are five specialists.
I will introduce them and they will speak briefly about our specialism.
First, Marijanne van der Schalk, who is a nursing home physician
and palliative care consultant. She will tell you something about
how we work here in Sint Jacob and how we handle the end-of-life
discussion. Next, Marlies Veldhuijzen van Zanten, former President
of the Dutch Society of Nursing Home Physicians, will speak about
developments in The Netherlands since the first euthanasia. Next
to her is Roeli Dijkman, the present President of the Dutch Society
of Nursing Home Physicians, who will speak about the profession
of nursing home doctors in The Netherlands. Tjomme de Graas is
a nursing home doctor and he will tell you about his experience
as a SCEN doctor. Last but not least, Muriël Houthuyse will
speak about her experience as a nurse on the palliative care ward
here in Sint Jacob.
Ms Houthuyse: I am a nurse and have worked here
for one year in palliative care. We call our department the Hospice
Sint Jacob. Our department is independent and we have 10 beds.
Four or five beds are occupied by the incurable residents. The
other beds are for the residents who have to recover after an
operation. They usually do not need a lot of physical care, but
they have a programme of physiotherapy. The rooms we have for
the residents are fully equipped with furniture, and they have
their own fridge, shower and toilet. The rooms for the incurable
patients also have their own microwave ovens and stereo players.
We have a common living room which everyone can use—the
residents, their families, and the nurses and doctors. Our team
of employees comprise different kinds of care workers. We have
nurses, doctors, physiotherapists, psychologists, a social worker,
two volunteers, and a pastor from Sint Jacob. How do we work?
We try to create a home-like situation, and it means that people
have a lot of freedom. They are allowed to bring their own furniture,
and they tell us how they want to live their day. If they want
to wake up at 10 today, or eleven or twelve o'clock, it is okay.
The family can stay with us. If they want or if it is necessary,
they can sleep with us or eat with us. The visits from family
and friends are not restricted. The residents can even bring their
own beds for their rooms, but they or their family have to take
care of them themselves. The residents can use the facilities
of Sint Jacob, like the hairdresser, the shop, the dietician,
and so on. The care for each resident is different, because everyone
has different needs. We make a personal care plan, and it can
change hourly. It depends on the resident's situation. The family
can also take care of the residents, but they have to talk about
it with us. The nurses have had an education in palliative care.
The team give physical care and take care of the psychological,
the spiritual and emotional needs of the residents. We like to
give residents a good quality of life in their last months or
weeks of their life. The team also take care of the emotional
needs of the family or friends. In the last part of life, we think
it is important that people feel comfortable. So we offer medication
and accompanying conversations, to reduce the fear of death or
to reduce pain, nausea, dyspnoea, and so on. Sometimes we give
a sedative, to try to take away the fear of death, or dyspnoea.
This only happens when everybody agrees. Very infrequently we
start the euthanasia procedure. I have not seen it during my year
here. It is a very careful procedure, but others can tell you
about it. The work is, of course, an emotional burden for the
team, and it is important that we can talk to each other. So we
do. We talk to each other during the work, but we also have a
regular meeting. We call it kek op de week—which,
translated, means "a look back on the week". Then we
talk to each other about our experiences and our feelings. I do
not want to sound arrogant, but we often hear from the people
who stay with us that they have a good time in our place—so
we think that we do our work very well.
Dr van der Schalk: I am Marijanne van der Schalk,
and I am a nursing home doctor in Sint Jacob and I have been working
here for 15 years. For four and a half years I have been running
the palliative care unit. Sint Jacob is a combined nursing home
and residential setting for the elderly. For the past four and
a half years we have had a unit for palliative care with about
five beds. Our unit is intended to be for people who are incurably
ill and have a life expectancy of about three months. Since the
opening, we have received about 160 patients. Half of these patients
come from home and the other half come from a hospital. The general
age on admission is 72 years, with a spread from 44 up to 102
years old. Most of our patients suffer from malignancy. Most patients
come to die in our place, and the average length of stay in our
unit is 28 days, ranging from one day to nine months. Muriël
has described our team. Our team is specially trained in palliative
care, and I myself did my training in Cardiff last year. Our main
goal is to offer good palliative care, in a specially equipped,
friendly, homely environment. Talking about the end of life and
exploring the wishes of the patient and his family form a part
of good palliative care. Most patients die from a natural cause,
which of course is our preference. However, many people want to
discuss the possibilities of euthanasia. Euthanasia is allowed
at Sint Jacob. We follow the legal rules, which mean that euthanasia
is performed when the patient is suffering unbearably; there is
no prospect of recovery; the request is not uttered in the course
of a psychiatric disease, dementia or depression; the request
is durable and consistent and not uttered in a flash of despair.
The request is put in writing. The doctor calls in a colleague
who is not in any way involved in the case, and the second doctor
evaluates the above and puts his or her findings in writing. That
is done in such a manner, using the type of medication particularly
suited to such a course of action. After the patient's death,
the doctor reports to the authorities in the form of the coroner,
who is called in to assess the procedure. Although the possibility
of euthanasia is discussed frequently in our place, in four and
a half years we have only performed euthanasia once. In one other
case we were preparing the procedure when the patient died from
pneumonia. This was a patient suffering from motor neurone disease.
The fact that euthanasia is a possibility here gives the patient
the feeling that he remains in control and brings about rest and
confidence. Very often, this subject does not need to be discussed
any more, or is postponed indefinitely. I think that this attitude
towards euthanasia reflects the character of the Dutch patient-doctor
relationship, which I would describe as open, confidential, mature
and equal. This relationship offers the patient the possibility
to choose his own path, within reasonable boundaries. I would
say that the doctor-patient relationship has been improved by
our struggle to legalise euthanasia. It shows the patient our
honest wish to travel with him in the final stages of terminal
illness and to explore together the wishes and possibilities of
the patient and his family. On the other hand, the fact that euthanasia
is a possibility also puts a burden on the doctor who has to deal
with it and to deal with patients who demand euthanasia and regard
it as a right—which, of course, can never be the case—and,
finally, to perform euthanasia, which is an intensely emotional
and imposing burden. We doctors never consider euthanasia as a
common medical procedure, and dying from a natural cause will
always be our preference. All in all, I find that looking after
terminally ill patients is an enormously rewarding task and, in
my experience, euthanasia rarely comes into it—though there
are exceptional situations in which euthanasia can be a blessing,
because it provides a way of dying with dignity.
Dr Veldjuijzen van Zanten-Hyllner: Did you have
any specific questions that you would like to ask first?
Q1712 Chairman: I think that you
should say what you have to say first.
Dr Veldjuijzen van Zanten-Hyllner: I am Marlies
van Zanten. I have been a nursing home physician since the beginning
of the 1980s. I was involved in a project to enhance the medical
students' curriculum with palliative care. I think that you may
have heard of the COPZ movement when you were at the Royal College
of Physicians and from Professor van der Wal at the university,
because he was also involved in that. I have brought some of that
material with me. In the letter that was sent to us there was
mention of "recent legislation", but the legislation
in Holland has taken 25 years to develop and it is a practice
that has developed very slowly, step by step. I also saw the term
"slippery slope" used. It may be a slope in the sense
that it is a trajectory, but it is not a slippery slope. It has
been a course of development which has been taken bit by bit,
and also evaluated bit by bit on the ethical and the legislative
side. In the early 1980s, we started with the possibility of ending
the life of terminally ill cancer patients. The category of people
who were physically proven, diagnosed as infaust prognosis—people
who were going to die—became the first category to get that
possibility. That has been slowly widened, little by little, step
by step, until this point in time—where we have reached
an area where we are out of the medical jurisdiction, out of the
area where we can determine the criteria which are weighed, but
it is in our domain because we are the ones who are asked to perform
this action. However, it has been a very gradual process and it
has been a process which has carried the whole of society. I think
it is very important to realise that. Otherwise, it does not give
you the feeling of solidarity in the Dutch population, which I
think is very relevant to it. The question was asked, "Do
you see death as a harm or as a therapeutic option?". I think
that we have gradually grown not to see death as a harm in all
cases, but sometimes as the only way out, where it is the last
thing that we can do for the patient and, in that sense, it is
our medical option.
Dr Dijkman: I am Roeli Dijkman and I am the
President of the Dutch Association of Nursing Home Physicians.
We are going to change our name, because we are not treating nursing
homes; we are treating the elderly and the disabled with long-term
care and we do some rehabilitation, as you have heard. So we will
get another name. It is also good to know that not all the people
in Holland go to a nursing home; it is just a few people, five
per cent, who are 80 years old or more. When you look at the houses
in Amsterdam, you can see why. When you are disabled, you cannot
get up the stairs. We also have the care of people who live in
normal homes which are adapted for disabled people. I think that
we give good medical and social care for elderly people and for
disabled people. There was a big discussion on television yesterday,
and it was about widening the rules. At the present time, the
criteria for euthanasia are a classification of diseases from
which you die. There are also diseases which involve many functional
disorders, which can make life a burden—and that was the
discussion on the television. I am very honoured that you have
come to Holland to hear our view on this matter. There is also
a discussion of perspectives. When you are from Holland, the language
is mostly explicit—and that is also the way in which this
matter is handled. We are explicit about what we are doing. When
I look at other countries where the medical actions around the
end of life are not explicit, you handle it in almost the same
way but you give it another name. When terminal sedation came
here from England as good palliative care, we asked, "How
far away is that from euthanasia? Isn't that a grey area legally?".
I would like to hear your opinion on that. I am not a native English
speaker, as you can hear. However, it is a very delicate issue,
so please excuse us if we do not use the right words or nuances.
Dr de Graas: My name is Tjomme de Graas. I am
also a nursing home physician, a palliative care consultant and
a SCEN physician. I will try to describe for you this unique concept
of SCEN physicians within the euthanasia procedure. SCEN is an
acronym for Support and Consultation in Euthanasia in The Netherlands.
With the legalisation of euthanasia in The Netherlands, this specific
medical function was initiated by the Royal College of Physicians.
SCEN physicians are a special breed, with special training for
a very delicate task. The reasons for creating this SCEN function
are threefold. First, it is very important that physicians who
are confronted with a patient expressing the wish for euthanasia
have the possibility to contact a colleague, who is independent
and capable of supporting this physician in his or her medical
and also emotional process and judgment. Because of our training
we can, with the physician, draw the complete context of the request
for euthanasia, hopefully also to clarify some aspects that may
be overlooked in such stressful and extraordinary situations.
Second, in the case of euthanasia the law prescribes an assessment
by an independent physician—the second opinion. SCEN physicians
always carry out a bedside consultation with the patient, combined
with the consultation of the physician and the medical file. This
is in order to assess or evaluate or, if you like, investigate
the procedure as stated by the law. Because of our training, but
also because of our experience and the countrywide availability
of SCEN physicians, this guarantees a uniform and independent
view and, as you heard from Marijanne, control of the procedure.
After we have carried out our consultation, we give the physician
a written report in which we state whether or not the procedure
has been completed. This means that we give our specific view
of all the medical, social and psychological aspects, within the
context of the law. If the euthanasia is effected, the SCEN report—as
part of the complete file—will be sent to the committee
which will give the final judgment. Third, by professionalising
the second opinion, physicians are supported in following the
procedure. We think that this initiates the effect that, by using
SCEN physicians and where there is positive advice, there is less
resistance to reporting the euthanasia. This facilitates the possibility
of countrywide registration and investigation of our euthanasia
procedure and law, but also investigation of the boundaries of
the slope.
Q1713 Chairman: Thank you very much.
You have given us a very interesting account of what I might call
the practice, which we have been studying perhaps a little more
theoretically until now. It is good to have an opportunity to
discuss with those who are at the sharp end of the work, and to
know how it is done. In particular, I am glad that we have one
of the SCEN doctors with us. We have heard a good deal about that
function and its importance in reviewing the details of what has
happened, or is going to happen, in each particular case. We have
been told that when the physician phones up—this is the
physician who is contemplating carrying out euthanasia—he
or she will not know who will be the SCEN doctor answering the
telephone and responding to the invitation. There is therefore
a degree of independence guaranteed by that. Once the conversation
starts, it may be apparent that there is some connection, in which
case, we are told, the SCEN doctor first approached will hand
over the case to a colleague. Is that correct?
Dr de Graas: That is correct. It is the responsibility
of the SCEN doctor to determine whether he thinks he is independent
enough to do the consultation. We are almost militaristically
trained to be sure that that is the first point. When, as a SCEN
doctor, I think that I am not independent, I give the case to
a colleague.
Q1714 Chairman: That is what we had
understood and it is good to receive confirmation of that. Am
I right in thinking, from what you have told us, that the SCEN
doctors have received particular training in this work? I was
not clear, and it is probably my fault, as to exactly what that
training incorporates. It incorporates a considerable knowledge
of palliative care, is that right?
Dr de Graas: It is not totally right—yet.
Q1715 Chairman: Also, does it involve
knowledge of the possibilities of troubles, such as depression
for example, that might damage the patient's competence to give
a really considered request? Am I correct so far?
Dr de Graas: So far, so good.
Q1716 Chairman: The SCEN doctor will
have an opportunity of seeing the patient and appraising for himself
or herself the mental condition of the patient; but do you expect
a doctor who approaches you first to have done that, at least
in a preliminary way, and to tell you in the first communication
that you have with him or her what the situation is so far as
the patient's mental condition is concerned, as well as the account
of the physical condition, the pain, the suffering—whatever
the nature of that is—and the possibilities of recovery?
Dr de Graas: I think that it is quite simple.
As a SCEN doctor, when I am called by a colleague I have a lot
of questions that I ask—as you said, about competence and
depression. They are all involved in my list of questions. Also,
the emotional aspects of euthanasia are so great that every doctor
who is asked to perform euthanasia, who calls the SCEN doctor,
is almost always the one who can highlight any subject with a
patient in the deepest way. He knows what he is talking about.
If, as the SCEN doctor on the telephone, I think that he is not,
I ask him to do that first—even before I do my bedside consultation.
Dr Dijkman: The criteria are so clear for every
doctor in Holland, they know that, before they consult a SCEN
doctor, they have had to have fulfilled the criteria.
Q1717 Chairman: These are the criteria
that are in the statute?
Dr Dijkman: Yes—always.
Q1718 Chairman: You consider these
to be clear. The questions relate to whether or not the patient's
case conforms to these criteria.
Dr Dijkman: Yes. As the performing doctor—what
was the question again? I am sorry.
Q1719 Chairman: You consider the
conditions laid down in the Act of Parliament clear, and the only
real question is whether the patient's condition conforms to these,
and whether or not there has been a well-considered request.
Dr Dijkman: And a SCEN doctor will test the
performing doctor as to whether he has carefully looked at the
criteria. So it is the question of voluntariness, of depression,
of mood disorders—everything.
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