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Role of ART Counseling
Sujoy Dasgupta
Consultant, Reproductive Medicine,
Genome fertility Centre, Kolkata
Why Counselling is Important in ART?
Loss of
• Dream
• Hope
• Future plan
• Marital satisfaction
• Self esteem
• Sense of control
• Privacy
Leads to
• Shock
• Disbelief
• Sadness
• Anger
• Guilt
• Blame
• Depression
Stress and ART
• When couples have fertility problems, both partners should be informed that
stress in the male and/or female partner can affect the couple's
relationship and is likely to reduce libido and frequency of intercourse
which can contribute to the fertility problems. (NICE, 2013)
• ART is the most stressful of all Infertility Treatments (80%) (Connolly et al,
Hum Reprod, 1993)
• Women report significantly greater infertility-related anxieties than men
regarding life satisfaction, sexuality, self-blame, self-esteem and avoidance of
friends.(Newton et al, fertil Steril, 1999)
• Unsuccessful treatment raises women’s level of negative emotions (anxiety,
depression and general distress), which continue to persist after consecutive
unsuccessful cycles.
Types of Counselling
• implication counselling
• support counselling
• therapeutic counselling
These parts are not separate and
linear but typically overlap.
Support counselling
• In this area of counselling, the counsellor offers emotional support
before, during or after treatment, particularly to those experiencing
stress, ambivalence or distress.
Therapeutic counselling
• It involves the development of coping strategies to minimise distress
and maximise problem solving, conflict resolution and addressing
specific issues such as sexual, marital and other potential
interpersonal problems.
• It is recommended that the ‘reasonable welfare principle’ be applied.
Empathy/ Sympathy ?
Implication counselling
when an individual or couple seek treatment
1. that will create embryos in vitro
2. to store their gametes or embryos
3. with donated gametes or embryos
4. to donate their gametes or embryos for the treatment of others
or for use in non-medical fertility services/research purposes or
for training people in embryo biopsy, embryo storage or other
embryological purposes.
• This type of decision making and implications counselling includes,
but is distinct from, the more legal concept of informed consent
Gamete/ Embryo Donation
• counsellors need to remind all donors
and recipients of the legal aspects
• partners can be the legal parent of any
child born from their partner’s
treatment as long as both have provided
written consent to this prior to
treatment.
• minimum of 2 counselling sessions
should be made available to anyone
considering gamete/embryo donation
and egg/sperm sharing.
• Oocyte donors should be offered information
regarding the potential risks of ovarian
stimulation and oocyte collection.
• Oocyte/ sperm recipients and donors should
be offered counselling from someone who is
independent of the treatment unit regarding
the physical and psychological implications of
treatment for themselves and their genetic
children, including any potential children
resulting from donated oocytes.
• Couples should be offered information about
the relative merits of ICSI and donor
insemination in a context that allows equal
access to both treatment options
Fertility Preservation
• Cancer Diagnosis
• Social Egg Freezing
• The implications of the posthumous use
of sperm by bereaved women
• focusing on the illness and death of their
loved one
• the likelihood of treatment success
• the psychological welfare of any
potential children
• feelings about the possible disposal of
any remaining gametes
Who needs counselling (NICE, UK, 2013)
• Couples who experience problems in conceiving should be seen
together because both partners are affected by decisions surrounding
investigation and treatment.
• People who experience fertility problems should be informed that they
may find it helpful to contact a fertility support group.
• People who experience fertility problems should be offered
counselling because fertility problems themselves, and the investigation
and treatment of fertility problems, can cause psychological stress.
• Counselling should be offered before, during and after investigation
and treatment, irrespective of the outcome of these procedures.
• Counselling should be provided by someone who is not directly
involved in the management of the individual's and/or couple's fertility
problems.
Know your patient’s rights
Who can counsel
• ART Clinical Nurse
• Patient Educator
• IVF Nurse Coordinator
• Patient Advocate
• Patient Counselor
• Nurse Researcher
• Nurse leader
Where to provide Counselling
• Room
• Sitting Arrangement
• Persons in the room
• Dress
• Verbal Communication
• Non-Verbal Clue (e.g. arms uncrossed and
upper body leaning slightly forward,
maintaining good eye contact)
Smile- The most Lethal weapon
Arrival and greeting
• Going to the waiting room to collect the
woman yourself is helpful
• This greeting may simply be by checking the
woman's name and giving your own name.
• Remember to also introduce any other
person(s) in the room.
• Find out who is accompanying the woman
but beware of making assumptions.
• Ensure that she is not staring directly at the
sun and that she can clearly see your face
during the consultation.
5 Steps of Consultation
Special Requirement
• Hearing Impairment
• Use of interpreters
Information Gathering
• Personal
• Life style
• Medical
• Gain his/ her confidence
• Sexual history
• Information about partner
• Anything he/ she wants to disclose
• Do you need to approach the man/ woman separately
How Infertility has affected them
• I never felt that getting pregnant could be so difficult for me
• Pregnancy is a part of my feminine life
• I will never be able to become a mother
• May be, I am taking little more time to fulfil my dream
• People think I am selfish because I am not having baby
• I don’t care what people are saying
• Even cancer patients are getting cured. Why shouldn’t I?
• I know medicine has its own limitations and there is no guarantee.
Something Fishy
• Authoritative Partner/ Family Members
• Patient talks very little
• No eye contact/ head nodding
Open question
• Identify the reason for the woman's attendance.
• Open-ended questions often begin with "how", "tell me", "why",
"what" or "describe".
• "I’ve read the referral letter from your doctor but in your own words
can you tell me why you have come today" or "Tell me what is
troubling you".
• Having asked this question it is best to allow the woman to make her
opening remarks without interruption
Listening
• appearing interested in the person and what they are saying
• not interrupting the speaker
• avoiding distractions from external events, e.g. telephone calls
• using expressions such as "uh-huh", "yes", "hmm", this will encourage the
woman to go on and convey that you are registering the information,
known as active listening.
• echoing
• clarifying answers and checking understanding
• summarising what has been heard
Directing the consultation
• After allowing the woman to tell her story you will need to use
techniques combining open and closed questions to guide her to give
the information you need.
• Another helpful way to demonstrate you are listening and clarify is to
summarise what has been heard, for example, "you say you have tried x
treatment for conceiving but neither of these helped and now you are
thinking something advanced treatment, is this correct?"
Explanation and planning
• Patients' concerns usually resolve around one of two broad issues:
1. apprehension about the condition (diagnosis, prognosis, cause)
2. anxiety about the medical care (tests and treatment).
• first find out what the patient already knows
• If the information is complex it is important to reduce it to distinct sections,
e.g., "there are four areas we need to discuss"
• After the explanation, it is pertinent to reflect on whether the his/ her
expectations have been met.
• Once this has been addressed, a plan of management has to be formulated
that is mutually acceptable.
• It is necessary to check that the he/ she is happy with the outcome of the
consultation.
Who can take the decision
• Health care provider
• Man
• Woman
• Couple
Disseminating Information
• Verbal
• Written- English, Vernacular
• Online links
• Support groups
• Fact sheets- Individual conditions
• Tip sheets- treatment decided
• Summary sheets- Patient oriented
I want to speak whatever I know!
If you do not know
Financial Aspect
• Too costly affair
• Can’t you consider my case
“The cost (with suitable break-up) to the patient of the treatment
proposed and of an alternative treatment, if any (there must be no
other ‘hidden costs)” (ICMR)
Before any Procedure
• Explanation
• Valid Consent
Valid Consent
The patient must have capacity to make an informed decision:
• considered competent to give consent
• able to understand information provided
• Able to retain the information
• can communicate their decision
Consent must be provided voluntarily:
• In most cases the decision to provide or withhold consent should be by the patient themselves.
• The patient should not be coerced or influenced by carers, family or friends.
The patient should be fully informed of the following by carers with enough time allowed to reflect
and ask questions:
• benefits and risks of the intended procedure
• alternative management strategies
• implications of not undergoing the proposed treatment.
The proposed procedure
• medication
• anaesthesia
• pain
• recovery
• Examination of intimate area
• likely impact on daily and personal life (e.g. time off work, driving, lifting,
sexual activity)
• video, photographic and digital record-keeping
• Additional procedure that may be required- TESE, Mock ET, ET under
anaesthesia, freezing, blastocyst, PGS
• What procedure should not be done
• Specific circumstances
Risks
Serious risks
• trauma to bowel, bladder, ureter
and major blood vessels
• Bleeding
• OHSS
• Infection
• death (if considered appropriate
to inform the patient during the
consent process)
• return to theatre
Frequent risks
• Pain
• Soreness
• bruising
• Failure to retrieve the eggs/
sperms
• Failure of fertilization
• Failure of the embryo to survive
the freeze-thaw process
Long-term health outcomes and safety of IVF
• No direct association has been found between these treatments and invasive cancer
but a small increased risk of borderline ovarian tumours cannot be excluded.
• No association has been found in the short- to medium-term between these
treatments and adverse outcomes (including cancer) in children born from ovulation
induction / IVF
• The absolute risks of long-term adverse outcomes of IVF treatment, with or without
ICSI, are low.
• Information about long-term health outcomes in women is still awaited.
• Despite the fact that the treatments have been established practice for over 40 years, the
longest length of follow-up in the studies reviewed was 20 years, and the larger studies
had shorter follow-up periods.
• The basis, limitations and possible outcome of the treatment proposed, variations in its
effectiveness over time, including the success rates with the recommended treatments obtained
in the clinic as well as around the world (this data should be available as a document with
references, and updated every 6-12 months).
• The possible side-effects (e.g. of the drug used) and the risks of treatment to the women and
the resulting child, including (where relevant) the risks associated with multiple pregnancy.
• The need to reduce the number of viable foetuses, in order to ensure the survival of at most two
foetuses.
• Possible disruption of the patient’s domestic life which the treatment may entail.
• The techniques involved, including (where relevant) the possible deterioration of gametes or
embryos associated with storage, and possible pain and discomfort.
• The importance of informing the clinic of the result of the pregnancy in a pre-paid envelope.
• The advantages and disadvantage of continuing treatment after a certain number of attempts.
After the procedure
• Debriefing
• If something goes wrong
• Breaking bad News
Something went wrong
• A minor mistake- a mistake that did not cause added problem for the
woman but corrective action should have been undertaken.
• A moderate mistake- caused additional suffering to the woman but was
not life threatening.
• A serious error- resulted in the death of the woman or a 'near miss'.
Issues to be considered when something goes wrong
• Informing the woman
There is recent evidence that women would prefer to know if they had been subject to
a medical error, even though they had not suffered any adverse effects.
• Informing seniors
Undoubtedly, it is best to be honest about mistakes, sharing the fact that it has
occurred with a senior colleague.
This will allow reflection on why the error occurred and how it can be avoided in future.
• Apologising
An apology is often all that the woman wants. This does not constitute an admission
of guilt.
Breaking Bad News (BBN)
A commonly used model for BBN is Kaye's model (1996).
1. preparation
2. what does he/ she know?
3. is more information wanted?
4. give a warning shot
5. allow denial
6. explain if requested
7. listen to concerns
8. encourage ventilation of feelings
9. summarise and plan
10. offer further information.
Reaction to BBN
• Denial
• Hopeless
• Angry
• Crying
• Blaming herself
• Can’t understand
“Difficult” Patients
• I want to do it now
• I want to undergo this treatment only
• I cannot wait for long time
• I want to see Dr X only and that’s now
• I want to make complaint against the service/ staff Y
• Why I was not told about it
• It’s your fault. That’s why my treatment failed.
Documentation
• Information Collected
• Sensitive Information- ?
• Discussion
• Investigation/ Treatment offered
• Merits and demerits
• Risks
• Agreed/ disagreed
• Any specific concerns
What clinics can do
• Waiting areas- access to reading materials, water, restrooms
• Private rooms for consultation/ counselling
• Billing and scheduling- confidential manner
• Sample collection room
• Private recovery area
• Bereavement counselling
• Patient Advocate/ Ombudsman
• Patient surveys/ suggestion box/ open feedback
How Effective the Counselling is
• Typically, the literature quotes an average rate of 20% for uptake of
counselling within the field of infertility, with higher uptake by
participants with higher levels of education, and by those from the
middle and upper classes than by participants from lower social
classes. ( Joy et al, The Obst and gynaec, 2015)
How to improve your skill
• If your mind does not know………..
• Training
• Seeing others doing
• Practice
• Role Player
The Role of Counselling in IVF

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The Role of Counselling in IVF

  • 1. Role of ART Counseling Sujoy Dasgupta Consultant, Reproductive Medicine, Genome fertility Centre, Kolkata
  • 2. Why Counselling is Important in ART? Loss of • Dream • Hope • Future plan • Marital satisfaction • Self esteem • Sense of control • Privacy Leads to • Shock • Disbelief • Sadness • Anger • Guilt • Blame • Depression
  • 3. Stress and ART • When couples have fertility problems, both partners should be informed that stress in the male and/or female partner can affect the couple's relationship and is likely to reduce libido and frequency of intercourse which can contribute to the fertility problems. (NICE, 2013) • ART is the most stressful of all Infertility Treatments (80%) (Connolly et al, Hum Reprod, 1993) • Women report significantly greater infertility-related anxieties than men regarding life satisfaction, sexuality, self-blame, self-esteem and avoidance of friends.(Newton et al, fertil Steril, 1999) • Unsuccessful treatment raises women’s level of negative emotions (anxiety, depression and general distress), which continue to persist after consecutive unsuccessful cycles.
  • 4. Types of Counselling • implication counselling • support counselling • therapeutic counselling These parts are not separate and linear but typically overlap.
  • 5. Support counselling • In this area of counselling, the counsellor offers emotional support before, during or after treatment, particularly to those experiencing stress, ambivalence or distress.
  • 6. Therapeutic counselling • It involves the development of coping strategies to minimise distress and maximise problem solving, conflict resolution and addressing specific issues such as sexual, marital and other potential interpersonal problems. • It is recommended that the ‘reasonable welfare principle’ be applied.
  • 8. Implication counselling when an individual or couple seek treatment 1. that will create embryos in vitro 2. to store their gametes or embryos 3. with donated gametes or embryos 4. to donate their gametes or embryos for the treatment of others or for use in non-medical fertility services/research purposes or for training people in embryo biopsy, embryo storage or other embryological purposes. • This type of decision making and implications counselling includes, but is distinct from, the more legal concept of informed consent
  • 9. Gamete/ Embryo Donation • counsellors need to remind all donors and recipients of the legal aspects • partners can be the legal parent of any child born from their partner’s treatment as long as both have provided written consent to this prior to treatment. • minimum of 2 counselling sessions should be made available to anyone considering gamete/embryo donation and egg/sperm sharing.
  • 10. • Oocyte donors should be offered information regarding the potential risks of ovarian stimulation and oocyte collection. • Oocyte/ sperm recipients and donors should be offered counselling from someone who is independent of the treatment unit regarding the physical and psychological implications of treatment for themselves and their genetic children, including any potential children resulting from donated oocytes. • Couples should be offered information about the relative merits of ICSI and donor insemination in a context that allows equal access to both treatment options
  • 11. Fertility Preservation • Cancer Diagnosis • Social Egg Freezing • The implications of the posthumous use of sperm by bereaved women • focusing on the illness and death of their loved one • the likelihood of treatment success • the psychological welfare of any potential children • feelings about the possible disposal of any remaining gametes
  • 12. Who needs counselling (NICE, UK, 2013) • Couples who experience problems in conceiving should be seen together because both partners are affected by decisions surrounding investigation and treatment. • People who experience fertility problems should be informed that they may find it helpful to contact a fertility support group. • People who experience fertility problems should be offered counselling because fertility problems themselves, and the investigation and treatment of fertility problems, can cause psychological stress. • Counselling should be offered before, during and after investigation and treatment, irrespective of the outcome of these procedures. • Counselling should be provided by someone who is not directly involved in the management of the individual's and/or couple's fertility problems.
  • 14. Who can counsel • ART Clinical Nurse • Patient Educator • IVF Nurse Coordinator • Patient Advocate • Patient Counselor • Nurse Researcher • Nurse leader
  • 15. Where to provide Counselling • Room • Sitting Arrangement • Persons in the room • Dress • Verbal Communication • Non-Verbal Clue (e.g. arms uncrossed and upper body leaning slightly forward, maintaining good eye contact)
  • 16. Smile- The most Lethal weapon
  • 17. Arrival and greeting • Going to the waiting room to collect the woman yourself is helpful • This greeting may simply be by checking the woman's name and giving your own name. • Remember to also introduce any other person(s) in the room. • Find out who is accompanying the woman but beware of making assumptions. • Ensure that she is not staring directly at the sun and that she can clearly see your face during the consultation.
  • 18. 5 Steps of Consultation
  • 19. Special Requirement • Hearing Impairment • Use of interpreters
  • 20. Information Gathering • Personal • Life style • Medical • Gain his/ her confidence • Sexual history • Information about partner • Anything he/ she wants to disclose • Do you need to approach the man/ woman separately
  • 21. How Infertility has affected them • I never felt that getting pregnant could be so difficult for me • Pregnancy is a part of my feminine life • I will never be able to become a mother • May be, I am taking little more time to fulfil my dream • People think I am selfish because I am not having baby • I don’t care what people are saying • Even cancer patients are getting cured. Why shouldn’t I? • I know medicine has its own limitations and there is no guarantee.
  • 22. Something Fishy • Authoritative Partner/ Family Members • Patient talks very little • No eye contact/ head nodding
  • 23. Open question • Identify the reason for the woman's attendance. • Open-ended questions often begin with "how", "tell me", "why", "what" or "describe". • "I’ve read the referral letter from your doctor but in your own words can you tell me why you have come today" or "Tell me what is troubling you". • Having asked this question it is best to allow the woman to make her opening remarks without interruption
  • 24. Listening • appearing interested in the person and what they are saying • not interrupting the speaker • avoiding distractions from external events, e.g. telephone calls • using expressions such as "uh-huh", "yes", "hmm", this will encourage the woman to go on and convey that you are registering the information, known as active listening. • echoing • clarifying answers and checking understanding • summarising what has been heard
  • 25. Directing the consultation • After allowing the woman to tell her story you will need to use techniques combining open and closed questions to guide her to give the information you need. • Another helpful way to demonstrate you are listening and clarify is to summarise what has been heard, for example, "you say you have tried x treatment for conceiving but neither of these helped and now you are thinking something advanced treatment, is this correct?"
  • 26. Explanation and planning • Patients' concerns usually resolve around one of two broad issues: 1. apprehension about the condition (diagnosis, prognosis, cause) 2. anxiety about the medical care (tests and treatment). • first find out what the patient already knows • If the information is complex it is important to reduce it to distinct sections, e.g., "there are four areas we need to discuss" • After the explanation, it is pertinent to reflect on whether the his/ her expectations have been met. • Once this has been addressed, a plan of management has to be formulated that is mutually acceptable. • It is necessary to check that the he/ she is happy with the outcome of the consultation.
  • 27. Who can take the decision • Health care provider • Man • Woman • Couple
  • 28. Disseminating Information • Verbal • Written- English, Vernacular • Online links • Support groups • Fact sheets- Individual conditions • Tip sheets- treatment decided • Summary sheets- Patient oriented
  • 29. I want to speak whatever I know!
  • 30. If you do not know
  • 31. Financial Aspect • Too costly affair • Can’t you consider my case “The cost (with suitable break-up) to the patient of the treatment proposed and of an alternative treatment, if any (there must be no other ‘hidden costs)” (ICMR)
  • 32. Before any Procedure • Explanation • Valid Consent
  • 33.
  • 34. Valid Consent The patient must have capacity to make an informed decision: • considered competent to give consent • able to understand information provided • Able to retain the information • can communicate their decision Consent must be provided voluntarily: • In most cases the decision to provide or withhold consent should be by the patient themselves. • The patient should not be coerced or influenced by carers, family or friends. The patient should be fully informed of the following by carers with enough time allowed to reflect and ask questions: • benefits and risks of the intended procedure • alternative management strategies • implications of not undergoing the proposed treatment.
  • 35. The proposed procedure • medication • anaesthesia • pain • recovery • Examination of intimate area • likely impact on daily and personal life (e.g. time off work, driving, lifting, sexual activity) • video, photographic and digital record-keeping • Additional procedure that may be required- TESE, Mock ET, ET under anaesthesia, freezing, blastocyst, PGS • What procedure should not be done • Specific circumstances
  • 36. Risks Serious risks • trauma to bowel, bladder, ureter and major blood vessels • Bleeding • OHSS • Infection • death (if considered appropriate to inform the patient during the consent process) • return to theatre Frequent risks • Pain • Soreness • bruising • Failure to retrieve the eggs/ sperms • Failure of fertilization • Failure of the embryo to survive the freeze-thaw process
  • 37. Long-term health outcomes and safety of IVF • No direct association has been found between these treatments and invasive cancer but a small increased risk of borderline ovarian tumours cannot be excluded. • No association has been found in the short- to medium-term between these treatments and adverse outcomes (including cancer) in children born from ovulation induction / IVF • The absolute risks of long-term adverse outcomes of IVF treatment, with or without ICSI, are low. • Information about long-term health outcomes in women is still awaited. • Despite the fact that the treatments have been established practice for over 40 years, the longest length of follow-up in the studies reviewed was 20 years, and the larger studies had shorter follow-up periods.
  • 38. • The basis, limitations and possible outcome of the treatment proposed, variations in its effectiveness over time, including the success rates with the recommended treatments obtained in the clinic as well as around the world (this data should be available as a document with references, and updated every 6-12 months). • The possible side-effects (e.g. of the drug used) and the risks of treatment to the women and the resulting child, including (where relevant) the risks associated with multiple pregnancy. • The need to reduce the number of viable foetuses, in order to ensure the survival of at most two foetuses. • Possible disruption of the patient’s domestic life which the treatment may entail. • The techniques involved, including (where relevant) the possible deterioration of gametes or embryos associated with storage, and possible pain and discomfort. • The importance of informing the clinic of the result of the pregnancy in a pre-paid envelope. • The advantages and disadvantage of continuing treatment after a certain number of attempts.
  • 39.
  • 40. After the procedure • Debriefing • If something goes wrong • Breaking bad News
  • 41. Something went wrong • A minor mistake- a mistake that did not cause added problem for the woman but corrective action should have been undertaken. • A moderate mistake- caused additional suffering to the woman but was not life threatening. • A serious error- resulted in the death of the woman or a 'near miss'.
  • 42. Issues to be considered when something goes wrong • Informing the woman There is recent evidence that women would prefer to know if they had been subject to a medical error, even though they had not suffered any adverse effects. • Informing seniors Undoubtedly, it is best to be honest about mistakes, sharing the fact that it has occurred with a senior colleague. This will allow reflection on why the error occurred and how it can be avoided in future. • Apologising An apology is often all that the woman wants. This does not constitute an admission of guilt.
  • 43. Breaking Bad News (BBN) A commonly used model for BBN is Kaye's model (1996). 1. preparation 2. what does he/ she know? 3. is more information wanted? 4. give a warning shot 5. allow denial 6. explain if requested 7. listen to concerns 8. encourage ventilation of feelings 9. summarise and plan 10. offer further information.
  • 44. Reaction to BBN • Denial • Hopeless • Angry • Crying • Blaming herself • Can’t understand
  • 45. “Difficult” Patients • I want to do it now • I want to undergo this treatment only • I cannot wait for long time • I want to see Dr X only and that’s now • I want to make complaint against the service/ staff Y • Why I was not told about it • It’s your fault. That’s why my treatment failed.
  • 46. Documentation • Information Collected • Sensitive Information- ? • Discussion • Investigation/ Treatment offered • Merits and demerits • Risks • Agreed/ disagreed • Any specific concerns
  • 47. What clinics can do • Waiting areas- access to reading materials, water, restrooms • Private rooms for consultation/ counselling • Billing and scheduling- confidential manner • Sample collection room • Private recovery area • Bereavement counselling • Patient Advocate/ Ombudsman • Patient surveys/ suggestion box/ open feedback
  • 48. How Effective the Counselling is • Typically, the literature quotes an average rate of 20% for uptake of counselling within the field of infertility, with higher uptake by participants with higher levels of education, and by those from the middle and upper classes than by participants from lower social classes. ( Joy et al, The Obst and gynaec, 2015)
  • 49. How to improve your skill • If your mind does not know……….. • Training • Seeing others doing • Practice • Role Player