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www.cancer.fi
Cancer Society of Finland
Counsellingservices
Counsellingservices
Cancer Society of Finland
www.cancer.fi
Cancer Society of Finland
The counselling service project:
Marja-Liisa Kotisaari, Tarja Konttinen, Virve Laivisto,
Leila Märkjärvi, Tiina Palva, Katriina Päivinen,
Minna Pöyhönen, Matti Rautalahti, Marjut Öster
and Anne-Katri Kemppainen.
Updated July 2010.
Lay-out:
Kirsi-Marja Puuras/Design Puuras
Photo:
Tuomas Marttila (cover), Joonas Korpilaakso
and Alexander Shalamov
Print:
Miktor 2010
ISBN 978-952-5815-99-3
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Contents:
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Introduction..................................................................The Cancer Society of Finland´s counselling services
Purpose of the counselling service
The counselling service’s guiding principles
The counselling service.................................................Concept
Counselling services – basic principles
The counselling service’s types of activity
Expertise of health care professionals
Patient records..............................................................General
Patient records
General principles of making entries
The right to make entries in patient records
Correcting entries in patient records
Right of inspection
Handing over patient records
Storing patient records
The Cancer Society of Finland´s counselling services....Phone counselling
National counselling service
Phone counselling service
Email counselling
Online counselling
Counselling by appointment
Psychosocial counselling and support
Other forms of counselling
Skin mole examination
Primary genetic counselling
Guidance and counselling on breast prostheses
Sources..........................................................................
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Cancer is a common disease. Over 200,000
people living in Finland are diagnosed with it at
some stage in their lives. Some of them recover;
some suffer a handicap or disability resulting from
the disease or its treatment. About 10,000 people
die each year of cancer. There is increasing pres-
sure on the he Cancer Society of Finland to supple-
ment public health care by providing counselling
services for cancer patients and their relatives at
the different disease stages.
The provision of advice by health care profes-
sionals is demanding work. In the encounter be-
tween patient and health worker there must be a
professional interaction that furthers the health,
knowledge and welfare of an individual or family.
This has to take account of individuals’ mental
attitudes, motivation, aims and interpersonal
skills, as well as their ability to achieve results.
Counselling will encompass the distinctive
features of good interaction, which include,
in addition to a good feeling on the part of the
individual, genuineness, openness, empathy,
listening and reciprocity. The patient must be
able to express his or herself, to be both accepted
and listened to, and have the opportunity to
make choices. The dialogical relationship within
interaction places special demands on the skills
of the health professional. The questions posed
by the health professional invariably have some
impact on the patient.
A health care professional is designated
in connection with the counselling service.
The professional involved in the counselling
deals with a designated patient, in accordance
with the 1992 Act on the Status and Rights of
Patients.
The provision of health care services in the
Cancer Society pertains to the 1990 Act on Pri-
vate Health Care. In this context the operational
health care unit refers to the clinics or counselling
facilities of the Cancer Societies across Finland.
The production of such services requires authori-
sation by the State Provincial Offices. The units
that produce health care services have to have
a manager in charge of the services, who as a rule
is a qualified physician. In the sale of procured
services to the public sector attention must be
paid to the regulations governing the sector.
IntroductionThe Cancer Society of Finland´s counselling services
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The purpose of the
counselling service
To provide information on cancer prevention,
early diagnosis and identification of symptoms,
treatment and rehabilitation.
To provide information of the forms of support
provided by the Cancer Society.
Health care services refer to:
laboratory procedures
radiology procedures and comparable
imaging and examination procedures
other examinations and procedures for
establishing a condition or disease or for
determining treatment
physiotherapeutic and other measures and
therapies for improving and maintaining
capacity
occupational health care
medical or dental services and other
health and nursing services, as well as parallel
services, such as the counselling services of
the Cancer Society of Finland
massage
The counselling services
guiding principles
Confidentiality
• Professionals involved in counselling work
are bound to professional confidentiality.
Professionalism
• The health care professional is obliged to
maintain and develop his or her professional
skills.
• The health care professional must take into
consideration the rights of the patient and
professional guidelines.
• The health care professional must recognise
the limitations of his or her professional skills.
• The health care professional must act in
accordance with the job description defined by
his or her employer.
Objectivity
• The starting point of the work is that the infor-
mation provided is based on high level scientific
research and generally accepted procedures.
Respect for individual autonomy
• Respect for individual autonomy means a
person’s right to choose on matters according to
his or her philosophy of life, ideas and values.
• It is the health care professional’s responsibility
to give the patient the necessary understand-
able information on the relevant area of
6
expertise, in order for the patient to take part
in making decisions that concern him or her.
• The carer providing the counselling will move
the discussion forward but will not steer the
patient’s decisions in a particular direction.
Equality
• The service must be easily available and must
aim to provide an individual service to everyone.
• From the point of view of equality, the central
issues are equality in the way people are treated,
non-discrimination and a respect for human
dignity.
Quality
• Continual evaluation is needed in order to
maintain a high-level counselling service.
Evaluation must be directed at the level of
expertise in both knowledge and skill.
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‘‘The purpose of the
counselling service
of the Cancer Society
is to provide
information on
cancer prevention,
early diagnosis and
identification of
symptoms, treatment
and rehabilitation.
It also provides
information of
the forms of support
provided by the
Cancer Society.
Concept
The counselling is professional, goal-oriented
activity given by a health care professional.
It may consist of a single or a series of sessions.
The professional interaction in the encounter
between the patient and the health care profes-
sional must support the health of the individual
or family, health know-how and well-being.
The patient’s situation in life, state of health,
existing level of knowledge, need for counselling
and expectations all have an impact on the
counselling.
Counselling services– basic principles
During counselling attention is paid to empow-
erment, meaning the patient’s achieving an
inner sense of strength, a possibility to exert an
influence on the situation and to take part in
activities concerning his or her health, decision-
making and planning for the future. Empow-
erment counselling builds on the basis of the
patients’ previous knowledge and experience
so that they can play more of a role in treating
their disease and in looking after their health.
Emphasis is put during counselling on everyday
needs and coping, patients’ resources, courses of
action and support networks. The mutual sharing
of information plays an important part in empow-
erment counselling.
Empowerment counselling involves active
participation, which requires that the patient
and counsellor have a mutually interactive
relationship, and that there is an unconditional
atmosphere of acceptance, security, trust,
appreciation and respect. In increasing the feel-
ing of control the intention is for the patient to
be able to control events and decide for him or
herself concerning matters.
Attention is also paid in counselling to
solution-centred approaches, which for the
patient means concentrating on future goals
and existing resources instead of looking for
the causes of problems. The solution-centred
approach emphasises doing: action, developing
solutions, experimentation and evaluation.
The counsellingservices
8
The counselling service’stypes of activity
Types of counselling activity include telephone
counselling, counselling at consultations and on-
line counselling. Health care professionals provide
counselling. People in need of counselling may be
those who have cancer, their relatives and friends,
professionals or people wanting to know more
about cancer.
Counselling is provided both on a general and
individual level. If a person prefers to be anony-
mous, counselling is provided on a general level.
Phone counselling includes both the national
phone counselling service, which is located at the
Helsinki office of the Cancer Society of Finland,
and phone counselling provided by the regional
cancer societies. People in need of counselling can
also put questions by email, either via the national
phone counselling service or a regional cancer
society. An effort is made to reply to email queries
that same day, or by the following day at the
latest. National counselling service offers secured
online chat sessions by appointment. The regional
associations conduct counselling consultations.
The consultations deal with the patient’s imme-
diate and pressing matters in a calm setting. These
may concern questions about cancer in general
(prevention, early diagnosis, matters concerning
treatment, rehabilitation), skin mole examinations,
genetic counselling and counselling and guidance
concerning breast prostheses.
General information provision concerns the
activity of the association and its services.
This sort of counselling can be given by other
staff members of the Cancer Society.
Expertise of health careprofessionals
Health care professionals working in the
Cancer Society comprise nurses, public health
nurses, practical nurses, physiotherapists,
doctors, psychologists, rehabilitation instructors,
laboratory nurses and primary nurses.
The health care workers of the national phone
counselling service and the provincial associa-
tions are health care professionals, in whose
work emphasis is given to professional expertise,
skills in meeting with and listening to clients.
Maintaining the skill and expertise of the health
professionals requires updating training, which is a
statutory obligation for health care professionals.
The employer has to make it possible for health
care professionals to maintain their professional
skills. Work guidance is an important component
of work endurance, and in developing one’s pro-
fessional skills and work.
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General
The protection of privacy is one of the fundamen-
tal rights of individuals in Finland. It is for this
reason that the compilation and use of personal
data is regulated fairly specifically. Sensitive data,
such as the collection of information on people’s
health is as a rule forbidden.The exception is that
health data can be collected only at health care
facilities. In private health care, health care data
may only be collected at permitted facilities with
the authorisation of the state provincial offices.
Later on in this section we consider the han-
dling of health data with respect to its importance
in counselling at the health care facilities of the
Cancer Society.
Patient records
The health care professional has to place the
necessary information in patient records in order
to safeguard the arrangement, planning, carrying
out and follow-up of patients’ treatment. Detailed
regulations on the compilation and storing of
patient records are contained in a decree of the
Ministry of Social Affairs and Health.
Patient records involve the use, compilation
and entry of documents and technical files in
arranging and carrying out the treatment of
patients. Appointment books and registers also
count as patient records. In general, almost all
documents that contain health information are
patient records. Data is given in a variety of
formats, such as paper, film, moulds/casts, and
so on.
General principlesof making entries
The information contained in patient records is
sensitive and must be kept confidential. In com-
piling, using, storing, submitting and deleting
patient records careful and knowledgeable
procedures must be followed. In addition, care
must be taken to ensure that there is enough
important information put in the patient records
from the perspective of arranging the examination
and treatment of patients. It is important to
Patient records
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consider carefully the information need expressly
from the perspective of arranging examinations
and treatment. Entries must be understandable
and correct. For instance, abbreviations should be
avoided.
The adequacy of entries made to patient records
and the making of them are important from the
point of view of realising both the rights of pa-
tients and the rights of health care professionals.
It should however be kept in mind that documents
containing patient information that are drawn up
in connection with complaint procedures, matters
of damages concerning patients or court cases are
not patient records, and they should not be stored
together with patient records, but elsewhere
where they cannot be accessed by outsiders.
The basic information to be entered on patient
records is determined by the Ministry of Social
Affairs and Health. This comprises:
The patient’s name, date of birth, ID number,
place of residence and contact information
the name of the health care facility (or the name
of the independent practitioner)
the name and position of the person making
the entry and the date on which the entry was
made
the date of entry and source of documents
entered to the patient records
The right to make entriesin patient records
Entries to patient records can only be made by
health care professionals involved in the coun-
selling or treatment of the patients concerned.
A health care manager may give the right to
others, such as practitioners at health care facil-
ities, involved in the treatment of patients to
make entries to patient records.
Correcting entriesin patient records
In some situations the need may arise to correct
erroneous entries to patient records. Patients
themselves may ask that corrections be made.
There must be objective grounds for making
corrections. Making corrections is fairly uncom-
mon in the work of nurses, which is why health
care managers provide detailed instructions on
doing so.
Right of inspection
Health care facilities must give patients infor-
mation on the handling of their personal data.
This information must be given spontaneously
to each patient. This obligation can be fulfilled,
for instance, by informing patients of the matter
when they arrive for an appointment. Patients are
entitled to know about what information about
them is recorded in patient registers concerning
their treatment or whether information about
them is not recorded in the patient registers.
Health care managers can provide more precise
information on the right of inspection. Procedural
guidelines on the use of the right of inspection
must be given in the client/patient register,
which must be available to be seen by patients.
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Handing over patient records
Patient records may be passed to an outsider with
the written permission of the patient or on the
basis of legally stipulated entitlement. In certain
exceptional cases the requirement for written
consent may be bypassed. In health care facilities
outsiders include all staff members who are not
involved in the care (the personal counselling) of
patients. The spouses, children and other relatives
are also outsiders in this respect and are not
entitled to information without the written
permission of patients.
It is rare in the counselling work of nurses for
a request to be made for handing over patient
records. Because of this there must be particular
care and certainty in handing over records that
there are grounds for doing so. It is good if health
care managers provide instructions on this.
Storing patient records
Health care managers provide written instruc-
tions on storing patient records. Storage must be
arranged so that outsiders do not access patient
records. Storage must be such that the data is
kept unaltered and undamaged.
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‘‘Patients are entitled
to know about
what information
about them is recorded
in patient registers.
14
National counselling service
The national counselling service, Cancer Contact,
is a phone service available on weekdays at set
times. The counselling is provided by health care
professionals, and is available in Swedish as well
as Finnish. The counselling service provides
general level counselling. The service can be
contacted either by phone, email or online chat.
People are not obliged to give their name when
contacting the counselling service.
Emails are deleted once they have been
received and read. In matters conducted by email,
the following factors are taken into account,
which are included in the emails:
1. The Cancer Contact counselling service nurse
or health worker answers questions of a general
nature about cancer. Email counselling does not
involve making diagnoses.
2. Questions are answered as quickly as
possible. Answers are based on the information
supplied by the person sending the email. The
counselling service staff members do not have
previous health information concerning the person
sending the email.
3. Email counselling is not a replacement for
counselling, examinations or treatment given by
a doctor or health care professional.
4. There is no treatment relationship involved in
email counselling, and so the law on the status and
rights of patients does not apply in this context.
5. The counselling staff is committed to confi-
dentiality.
6. Cancer Contact is not a protected email
connection. Data security on the internet is not
perfect, and so people using the email service
should consider what they want to send by email.
Phone counselling
Health care professionals who provide phone
counselling work under their own names. Callers
can choose whether they want to give their name
or remain anonymous.
Counsellingservices of theCancer Society
15
Phone counselling
Email counselling
Email counselling takes place on a general level.
Email messages can be sent even outside office
times. If necessary and feasible, patients will be
instructed to visit the cancer association in person.
Email counselling observes national phone service
instructions. These instructions must be visible in
email messages. Emails are deleted once they have
been answered.
Online counselling
The Cancer Contact counselling service is also
available online. This chat service offers support
and information about cancer. Health care profes-
sionals are available to answer questions in one-
to-one sessions. Chat service can be used by
anyone who has internet access. Registration is
reguired for the login but no personally-identi-
fiable information is needed. Online chat is safe
to use, as it´s based on Secure Socket Layer (SSL)
connection.
Counselling by appointment
Counselling by appointment is dealt with in this
context exemplarily, specifically by the forms of
counselling developed by the Cancer Society
– skin mole examinations, counselling on hered-
itary diseases and instructions and counselling on
breast prostheses.
Patients contact the association and make an
appointment. In exceptional cases patients may
come for counselling without an appointment.
Initially, patients may be asked when making
appointments about what the counselling will
concern. This enables the counsellor to prepare for
the session. The recommended time for a coun-
selling session is one hour.
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It is good if phone counselling takes place at an
arranged time, and not at the same time as other
patient contacts. If this is not possible, the coun-
sellor can take a callback request from the patient.
The caller is told when he or she will be contacted
and by whom. The place where the phone coun-
selling is done should be quiet, in order to facilitate
an uninterrupted exchange between the counsellor
and caller. If the situation demands, the caller can
request a face-to-face meeting. If the phone coun-
selling takes place on a general level and does not
deal with the caller’s personal situation, it does
not need to be logged. The caller is told that the
counselling is of a general nature and that his or
her personal state of health will not be dealt with.
If the phone counselling concerns individual and
personal guidance for the caller, it will require that
a patient record entry be made.
The following informationis recorded:
basic information (times of calls, duration,
regional/provincial association, primary type
of cancer, other/earlier cancers)
caller information (who calling, gender, age,
language)
patient information (gender, age, situation
concerning cancer)
reason for call
whether directed elsewhere
assessment, call summaries
comments on calls and where callers received
contact information
The room where the counselling is held must be
appropriate. There must be the possibility for the
patient or family to have an uninterrupted, confi-
dential and one-to-one counselling session.
The substance of the counselling session must be
determined by the patient/family, and its progress
must take place on the patient’s/family’s terms.
Attention must also be paid during counselling
to the patient’s/family’s psychosocial situation.
Psychosocial counsellingand support
Patients get in touch with the Cancer Society
at a point of crisis due to illness. Because of this,
counselling work requires special preparation.
Psychosocial support and counselling are an
aspect of all of the Society’ s counselling services,
group activities and rehabilitation courses.
In this respect psychosocial support refers to
services providing mental, social and spiritual
support. The objective is to prevent and alleviate
the mental and social consequences of cancer and
to help patients cope with everyday life. Psycho-
social support comprises informative, emotional
and practical support. The counsellor’s encourag-
ing and supportive stance has an important role to
play. Becoming ill with cancer can bring about a
psychological crisis, reflected as a change in all
areas of life.
Mental anguish is a feeling of malaise from
which the mind seeks protection by automatically
triggering defence mechanisms. These provide
protection and help the patient to preserve his/
her ability to function and make decisions in a
threatening situation. When a person has cancer
it is common for their feelings to fluctuate. It is
common to go into denial about the illness, feel
anger, fear, distress, sorrow, depression, guilt and
loneliness. These are entirely normal feelings
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experienced when a person becomes ill.
Adjustment is influenced by the nature of the
disease, its progress, prognosis, the patient’s age
and situation and previous mental resources.
During adjustment the counsellor must pay
attention to the patient’s individuality, because
each patient’s experience of falling ill is distinctive.
It is important that in psychosocial examinations
the counsellor recognises and understands the
general features of the different stages of the crisis
experienced by the patient. The course of the crisis
varies with individuals and does not always follow
a set formula. Help for the patient begins from the
moment it is needed. If possible, the patient can be
asked to come to the association for an appoint-
ment. And if needed, the counsellor will refer the
patient to a specialist.
The course of psychological crises contains
different stages. The shock stage (initial upset)
protects the mind from unexpected and hard
information. The shock stage may last from a few
hours to a few days. The counsellor’s role is to
calm the patient, listen and create a secure
environment, answer questions frankly and keep
the situation under control. Speech emphases,
touching and being close may help calm and give
encouragement to the patient.
During the reaction stage the patient becomes
aware of what is happening and what it means.
At this stage the patient may feel guilt, aggression
or despair, suffer bad conscience and search for
different options. The reaction stage may last for a
few weeks or months. The counsellor’s task is to
listen to the patient’s feelings, thoughts and
responses, and to discuss and analyse with the
patient what has happened. The patient’s projec-
tive attitude may emerge already during the initial
stage of illness, when he or she will search for the
reasons for falling ill. It is good that the counsellor
recognises the responses that accompany this
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attitude, in which the issue is not that of personal
blame and against which it is not a question of
defence on an individual level. During this stage it
is important that the counsellor attains an inter-
action with the patient, creating a trusting and
secure contact.
During the processing stage mental processing
of what has happened takes place and the patient
seeks a sense of distance from it. Distress starts
to give way to finding coping mechanisms. The
patient ventures to consider the future and sees
something positive in it. The processing stage lasts
from a few months to a year. During this stage the
counsellor is a positive listener and empathiser.
It may sometimes be that the patient has become
stuck in a rut of strong emotion, such as anger,
the symptoms of which do not ease off and may
continue for a long time. The counsellor must then
refer the patient to a specialist, so that he/she
can examine the background to what he/she is
experiencing.
The new direction stage takes place when
getting over the crisis. The patient is able to com-
prehend his/her illness in such a way that it is not
a limitation on his/her life but has become part
of the course of his/her life. At best, the patient
feels a sense of strength and daring to live and is
confidence in his/her survival in the future.
The counsellor’s advice and guidance may be
forgotten during the period of crisis. It is import-
ant to give the patient written material, to which
he/she can return later. Counselling is considered
as a health care activity when it concerns matters
of individual and personal counselling. These
activities need to be written up. In addition to
entering important basic information in the patient
record, the counsellor records the subject dis-
cussed, a view of the patient’s situation, the guid-
ance that was given pr the content of the counsel-
ling and a possible recommendation for follow-up.
It is recommended that a new counsellor follow
the work and activity of an experienced counsellor.
If necessary, a counsellor can attend updating
training in crisis work.
Other forms of counselling
Other forms of counselling may deal generally
with questions about cancer, such as prevention,
early diagnosis, cancer treatment or rehabilitation.
Counselling is given by a health care professional.
Depending on the situation, discussion during
counselling can deal with the patient’s life style,
such as exercise, nutrition, smoking, the moderate
use of alcohol, and protection from the sun.
The patient can be encouraged to take up exercise
spontaneously in an appropriate way, taking into
account his/her illness and treatment. Counselling
information on smoking and support for quitting
smoking are available at www.stumppi.fi and
www.fressis.fi. The regional associations arrange
group support for quitting smoking and dealing
with withdrawal symptoms. It is also possible to
have one-on-one discussions on quitting smoking.
If needed, patients are referred to specialists
and new appointments can be made to examine
and make changes to patients’ lifestyles.
Counselling does not cover social welfare advice,
for which patients are requested to contact the
Social Insurance Institution. Counselling is re-
garded as a health care activity when it concerns
individual and personal counselling, for instance
related to matters concerning an individual’s
illness, prevention, early diagnosis, cancer treat-
ment and rehabilitation. These activities have
to be logged. In addition to basic information,
entries in patient records cover the subject of
discussion, the individual’s overall situation and
whether anything special has transpired during
the session.
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Skin mole examination
The examination of skin moles and skin changes
concerns the early prevention and diagnosis of
cancer. Performing examinations may involve
continual daily activity at an association’s facility
or it may be a campaign-style activity held over
a specific period and different parts of the associa-
tion’s area of operation. A health care professional
attached to the association performs examinations
of skin changes.
Some 15 minutes consultation time are reserved
for examining skin moles and instructing patients.
The examinations take place in a brightly lit con-
sulting room. Examinations are performed using a
dermatoscope or magnifying lens. The aim, where
possible, is to examine the patient’s whole body
and not merely the skin mole that the patient has
indicated. It is emphasised to the patient that the
nurse does not make a diagnosis of skin changes,
but instead will give instructions for follow-up
measures, if needed.
The patient’s situation is surveyed, first by
talking about what he/she has found and when,
the sort of symptoms the skin mole has shown or
whether there has been a change in the symptoms
– such as whether the skin mole has grown or its
colour has altered. In addition, attention is paid
to what patient’s profession is or what sort of jobs
the patient has done at work. The nurse then
examines the patient’s skin, paying particular
attention to the skin changes that the patient has
come to show. The nurse pays attention to the size
of the skin mole, its shape and colour.
From discussing with the patient, the nurse
will note the possible symptoms the skin mole
has displayed, such as itching, flaking, stinging,
irritating and bleeding. If the patient has had any
of these symptoms or if the skin mole has grown,
or its colour has altered, whether it is mottled or
has blurred edges, he/she is referred if necessary
for a consultation with a doctor.
During the consultation the nurse puts this
information on a form. The patient is given a
stamped-addressed envelope for sending the
feedback to the provincial cancer association.
The feedback received from the patient referred
for follow-up treatment is an importantpart in
evaluating the patient’s independent initiative.
Patients are instructed in how to inspect their
own skin moles. For the purpose of illustration,
photographs can be used of usual benign skin
moles and of abnormal ones. Patients are also
asked about their skin’s sensitivity to sunburn
and about their exposure to sunlight.
Health counselling
Patients receiving skin mole examinations are
given the Cancer Society´s brochure on exposure
to sunlight and taking sun. Patients are counselled
about how they can protect themselves from
ultraviolet radiation by using clothing, staying
in the shade, using sunglasses and siestas
(i.e. keeping out of the sun from 11.00-15.00).
They are also told about factors to do with using
sunscreens. Sunscreens are a supplement to all
other means of protection. Instructions are given
for treating sunburn.
Training
Nurses employed at the clinics for examining
skin moles need supplementary training. It is
recommended that training in examining skin
changes be carried out under the direction of a
specialist physician. Each provincial association
agrees on a specialist physician in their area who
is responsible for providing training. The training
covers the sorts of skin changes require follow-up
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measures or a referral for follow-up treatment and
how follow-up guidance is to be given. The Cancer
Society also arranges training days. Training and
photo materials for use in training courses on skin
mole examination are available from the Cancer
Society.
It is recommended that new health care coun-
sellors follow the work of and activity of their
experienced counterparts at clinics dealing with
skin mole examinations. New staff members are
instructed in examining skin changes, follow-up
treatment guidance, how follow-up guidance is
given, what kinds of skin changes require follow-
up procedures and providing health education.
Primary genetic counselling
The aim of primary genetic counselling is to pro-
vide patients and families with reliable information
on cancer and its genetic inherited on a case-by-
case basis and in an understandable form. The
Cancer Society´s primary genetic counselling
constitutes health care work requiring information
on genealogy and making a family tree of all
patients coming for genetic disease counselling
about cancer and receiving guidance. Those
giving primary genetic counselling at the Cancer
Society are trained health care professionals.
At the time of making an appointment for coun-
selling patients are given a genealogy form to fill
(if necessary this is posted to their home) for use
in counselling on the risk of genetic cancer.
The patient brings the genealogy form when
coming for primary counselling by a nurse or
physician. Patients are also given a brochure about
the Cancer Society´s primary genetic counselling.
The time allocated for counselling is one hour.
During counselling the health care professional
asks the patient about who in his/her family has or
has had cancer, the types of cancer involved and
the time of illness. The counsellor draws a family
tree based on the information provided by the
patient and the already-completed genealogy
form. From the perspective of genealogy it is
essential to have information on four generations:
the patient, his/her parents and grandparents, the
patient’s own children, and the patient’s siblings,
uncles, aunts, paternal uncles and their children.
If necessary, the patient is referred for a consultat-
ion with physician specialised in inherited cancer.
Based on the family tree and the genealogy form
the counsellor makes a preliminary estimation
about whether there is a need for a further
investigation/research or a consultation with the
physician responsible for the project on inherited
disease counselling. A copy of the patient’s family
tree is send, with his/her written consent, to the
physician responsible for the project on inherited
disease counselling, who is then consulted either
by phone or email.
The health professional conducting the coun-
selling makes an entry about the consultation to
the patient records. This includes, in addition to
basic key information, details of the content of the
counselling session, the counsellor’s follow-up
recommendation and other recommendations,
the patient’s resources and whether anything
remarkable transpired during the counselling.
The date is logged as well as the follow-up
recommendation for a consultation with the
physician responsible for the project on inherited
disease counselling. Genealogy follow-up inves-
tigations vary in nature regionally. Each regional
cancer association investigates, if necessary with
physician responsible for the project on inherited
disease counselling or a specialist physician,
what the opportunities are in primary health care
to provide patients with counselling in matters
related to genetic diseases and to refer the patient
accordingly. In providing genetic counselling the
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physician examines the patient’s family anamnesis
(for at least four generations or more), the patient’s
anamnesis (e.g. the kind of disease histology)
and ages when family members fell ill. During the
counselling session the physician supplements
the information already drawn on the patient’s
family tree. The preliminary form completed by the
patient aids the counselling session. If on the basis
of genealogy information and matters that come to
light during counselling it is found that there is an
increased risk of susceptibility to genetic cancer,
the patient is referred to the department of clinical
genetics of a university hospital.
Health counselling
All people applying for counselling are given in
advance the Cancer Society´s brochure on primary
genetic counselling, which gives general infor-
mation about cancer and its common risk factors.
In addition to lifestyle choices, one can look after
oneself by having a regular physical examination.
If there is an incidence of genetic colorectal cancer
in a patient’s family, it is recommended that his/
her close relatives at risk go for regular endoscopic
examinations every few years (see www.hnpcc.fi).
All women reaching the age of 50 should go for
mammography screening on a regular basis, and
women should also take part regularly in cervical
cancer screening (Pap test). All men reaching the
age of 45 are recommended to go for a prostate
examination.
Training
Professionals working in genetic counselling
require supplementary training, which is provided
by the Cancer Society. The physician responsible
for the project on primary genetic counselling
provides personal training on questions concern-
ing family anamnesis, drawing a family tree
on the basis of them, and estimating the risk and
genetic cancer in general by interpreting genetic
information. In addition, training involves draw-
ing family trees on the basis of the preliminary
genealogy form and family anamnesis. Training
also covers the interpretation of genealogy
information in risk estimation and hereditary
susceptibility to cancer in general. In addition,
genetics training takes place as a rule in
connection with the national days held for pro-
fessionals involved in counselling. Training and
photo materials related to hereditary disease
training are available from the Cancer Society.
It is recommended that new health care coun-
sellors follow the work of and activity of their
experienced counterparts at clinics dealing with
genetic counselling.
Feedback
In some regional societies and units of the
Cancer Society there are regular meetings with
the people from regional specialised health care.
Those patients referred to university hospitals
and their units of clinical genetics, will receive an
epicrisis from the Cancer Society or reference
of their attendance to the genetic counselling.
Nurses giving primary genetic counselling will
receive feedback from his/her work from a
specialist in clinical genetics or from the doctor
responsible of genetic counselling project of the
Cancer Society. Feedback will include information
on whether the patient was directed/referred to
further research. If the patient was referred to the
unit of clinical genetics or else-where, the feed-
back will include the following: what sort of follow-
up was recommended to the patient, did the unit
of clinical genetics reach a conclusion concerning
genetic cancer in the family, did the unit possibly
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refer the patient for genetic testing, was a possible
gene mutation found or not.
Counselling nurses will be given feedback of
their work annually when they meet at their
national educational/training seminar.
Guidance and counsellingon breast prostheses
Patients who undergo a mastectomy receive
information in hospital about how to apply for
breast prosthesis. Patients receive a payment
obligation for prostheses, which are free of charge
for patients. The fitting of the breast prosthesis
and the attendant counselling are carried out by
a health care professional. The patient makes an
appointment about a month after the operation.
By this time the scar from the operation will have
healed well and the surrounding area will no
longer be swollen. The time allocated for coun-
selling is one hour. In connection with making
the appointment the patient is asked to bring with
her the payment obligation (if this has been sent to
her home) and a pale shirt, the wearing of which
helps in working out the symmetry of the pros-
thesis. The patient is told that if she would like to
bring her spouse, friend or relative with her, they
can accompany her.
The fitting room must be wel llit and there
must be a full-length mirror. Prosthetic models
must be easily available. Before the prosthesis is
fitted the health care counsellor discusses the
patient’s situation with her, paying attention to
her psychosocial situation and family resources.
The counsellor clarifies the time of the operation
and whether the patient has had a follow-up
examination and whether she knows of possible
follow-up treatment. During the prosthetic
fitting the various alternatives are discussed with
the patient (models, shapes, weight) and the
considerations to do with how the patient’s body
feels. A mastectomy bra is selected for the fitting,
which are used for the self-care of the patient’s
healthy breast. The patient stands before the
mirror and her posture, level of shoulders and
maximum level of movement is examined (arm
straight up with thumb in front, kept still).
The health care counsellor makes sure that the
shoulder on the side that has been operated does
not stoop forward.
The patient is given instructions on using the
prosthesis following the fitting. She receives writ-
ten instructions with the prosthesis. The health
care counsellor explains about the exchange
warranty, and the patient is given details about
the different bra models for prostheses and where
they can be bought. Counselling covers the
meaning of the payment obligation and how it
can be exchanged. It is emphasised to the patient
that the prosthesis is intended for everyday use.
The prosthesis influences the posture of the
patient. If the patient does not use the prosthesis
it may result in neck and shoulder pain, if the
weight is more on the other side of the body.
For swimming, the patient is given a swimsuit
together with a right-to-use label to be sewn on it,
which indicates that the wearer may keep the
swimsuit on when washing and using the sauna at
the public swimming baths. The label can be sewn
on the lower part of the swimsuit, so that it can
be partly turned under the hem.
If the patient has come to exchange her prosthe-
sis, the counselling session will highlight matters
of overall health upkeep. The session charts the
patient’s overall situation by discussing about
general coping and adjusting to having the illness,
and, if necessary, follow-up matters.
In addition to basic information, the entry
logged in the patient’s record concerning the
breast prosthesis consultation records the model
Sources
In Finnish:
Helle L. Ratkaisu- ja voimavarakeskeinen näkökulma vuoro-
vaikutuksessa. Teoksessa Vilèn M, Leppämäki P, Ekström L.
Vuorovaikutuksellinen tukeminen sosiaali- ja terveysalalla.
WSOY 2002.
Kettunen T. Neuvontakeskustelu. Tutkimus potilaan osallis-
tumisesta ja sen tukemisesta sairaalan terveysneuvonnassa.
Jyväskylän yliopisto, Studies in sport, physical education and
health 2001:75.
Qvick L. Sairaanhoitajan eettiset velvollisuudet.
Teoksessa Mustajoki M, Maanselkä S, Alila A, Rasimus M (toim.)
Sairaanhoitajan käsikirja 2005. Duodecim. Hämeenlinna: Karisto
Legislation:
Act on the Openness of Government Authorities 1999/621
Act on the Status and Rights of Patients 1992/785
Decree by the Ministry of Social Affairs and Health on the
compilation of patient records, their storage and that of
other material relating to treatment 99/2001
Act on Health Care Personnel 94/559
Decree on Health Care Personnel 564/1994
Personal Data Act 99/523
See national database of Finnish legislation www.finlex.fi
(unofficial translations in English)
23
and size of the prosthesis, details of the bra,
the exchange of prosthesis (reason), discussion on
the use of the prosthesis, the patient’s resources
and whether anything special has transpired
during the counselling session.
It is recommended that new health care coun-
sellors follow the work of and activity of their
experienced. The Cancer Society are responsible
for training health care counsellors concerning
guidance and counselling on breast prostheses.
CANCER SOCIETY OF FINLAND
Pieni Roobertinkatu 9, FI-00130 Helsinki
Tel. +358 9 135 331Fax +358 9 135 1093
[email protected]@cancer.fi
www.cancer.fi
Cancer Society of Finland
www.cancer.fi
ww
w.c
ance
r.fi