Prospectiva

Statements of Recommendation

 All potential donors must undergo assessment by a mental health professional, preferably a member of the Donor Advocate Team. (B1)

 Mental health assessments can be undertaken by any suitably qualified mental health clinician. Centres with access to more than one type of clinician should direct referrals accordingly. Assessment by more than one professional may be appropriate in some cases. (D2)

 The purpose of mental health assessment is to:

a) Identify potential donors who should be excluded from donation due to mental disorder or inappropriate motivation. (B1)

b) Identify those who are more vulnerable to psychiatric risk and may need additional support after donation. (B1)

c) Confirm capacity to consent. (B1)

d) Explore motivation, particularly for altruistic donors. (B1)

 Mental health professionals undertaking these assessments should be familiar with the general issues that might arise in living donor transplantation, as well as organ-specific concerns. (Not graded)

 Clear referral routes to specialist mental health services must be identified for donors who later develop mental health problems. (C2)

 As part of the mental health assessment, it may be necessary to interview the donor’s next of kin (other than the recipient). (B1)

 Particular consideration must be given to the mental health assessment and support for donors who donate to recipients in urgent need of a transplant. (Not graded)

7.1 General Considerations

Various types of mental disorder are known to be prevalent in potential living organ donors. The evidence is best for the commonest type of donation, i.e. kidney donation (1). Prevalence rates may be higher among non-directed or altruistic donors (2).

UK practice for the mental health assessment of potential living kidney donors has evolved over time, and still varies widely between units, in terms of the proportion of potential donors referred for assessment, the professional affiliation of the assessing mental health clinician, and the remit and methods of assessment. For altruistic kidney donors, the Code of Practice for the Human Tissue Acts (see section 3) introduced a mandatory requirement for mental health assessment but said little about the form it should take, the questions it should seek to answer, or by whom it should be conducted (3). In 2012, the mandatory requirement was withdrawn but it remains the recommended clinical standard, endorsed by NHS Blood and Transplant (NHSBT) and British Transplantation Society (BTS).

Extrapolating from living donor kidney transplantation to living liver donor transplantation needs to take into account that:

 Living donor liver transplantation is much less common than living donor kidney transplantation and is concentrated in fewer transplant units. Therefore, there are fewer mental health clinicians familiar with the specific issues that need to be addressed in donor assessments.

 The short term medical and surgical risks for donors and recipients are significantly greater than in kidney transplantation. These need to be considered alongside the psychiatric risks of proceeding (or declining to proceed) with donation; this balance is different from living kidney donation.  With no dialysis equivalent for patients with liver disease, the stakes and often

the time pressures are greater for decisions about liver donation and transplantation in comparison with kidney donation and transplantation.

 The medical diagnoses and indications for liver transplantation are often stigmatised and may be viewed as self-induced through e.g. alcohol, drug abuse or obesity. This may impact more on the donor’s decision to donate than it would with a kidney transplant recipient. A living organ donor to a recipient

Since it became legally permissible in the UK in 2006, altruistic non-directed kidney donation has increased in frequency and in 2012-13 contributed 10% of all living donor kidney transplants (5). The first altruistic living liver donation in the UK was performed in 2012 to a paediatric recipient, but activity remains very low (see section 12.3). Experience in assessing such cases is necessarily limited.

Based upon these factors, the New York State Department of Health recommended in 2002 that all transplant units undertaking living donor liver transplantation should establish Donor Advocate Teams, to include a mental health clinician (4). These recommendations have since been adopted by UK centres undertaking liver transplantation using living donors (see section 6.4). The most important recommendation is that all potential donors should undergo mental health assessment at an early stage.

7.2 Purpose of Mental Health Assessment

Mental health assessments have several overlapping purposes, some specifically psychiatric (i.e. related to the subset with mental disorder), others psychological (applying to all donors). The overall purpose is to:

 Identify those whose wish to donate arises from mental disorder and who should, therefore, be excluded from donation. Few direct (family and friend) kidney donors are excluded on mental health grounds but anecdotal evidence suggests that 20-30% of non-directed altruistic donors do not proceed for these reasons (6). Potential living liver donors have also been excluded on mental health grounds (6).

 Identify otherwise suitable donors who may be more vulnerable to risks of mental health complications after surgery and could have additional support needs in the peri-operative and post-operative period.

 Clarify for all donors the appropriate route to access specialist mental health services in the event of mental health problems arising after donation.

 Confirm the donor’s capacity (i.e. his/her ability to understand, remember and weigh up the information presented, then make and convey their decision).  Explore motivation. This is particularly important in cases of altruistic donation

or when subtle degrees of coercion or pressure are suspected. Significant concerns about motivation may result in a donor being excluded from donation.

7.3 Assessing Clinicians

There is wide variation in access to mental health specialists within transplant centres and how services are funded and organised. In the UK, most centres and referring units will have access to either a psychiatrist or psychologist but few will have direct access to more than one type of mental health clinician. It is important that services, however they are provided in individual centres, are broadly consistent.

Any mental health clinician working in this field must be able to assess mental disorder (including substance misuse and personality disorder), motivation and capacity. Given the different emphases in training and clinical practice, it is preferable, where possible, for psychiatrists and nurse specialists to assess mental disorder and psychologists and/or counsellors to assess motivation.

It is most important that the assessing mental health clinician is familiar with transplantation procedures, timescales, risks and outcomes. In the context of living liver donation, it is best practice to refer potential donors to clinicians who are already familiar with the organ-specific issues rather than assuming a level of knowledge through living kidney donation alone.

7.4 Standardisation of Assessments

There is no agreement within the UK, or elsewhere, about standardisation of mental health assessments in living donation, and practice varies between centres. There is currently no evidence to guide consensus or recommendations in most areas. However, there is broad agreement amongst mental health professionals that there is need for a separate interview with a donor’s relative (other than the recipient).

Possible coercion and/or pressure should be considered when assessing motivation in the mental health assessment. This is also a requirement of the Independent Assessment for the Human Tissue Authority (see section 6.3). This may be best assessed by interviewing others as well as the donor, such as the donor’s next of kin (4). Where the next of kin is the potential recipient, the interviewee should be the next

References

1. De MA, Jacobs CL, Jowsey SG, et al. Guidelines for the psychosocial evaluation of living unrelated kidney donors in the United States. Am J Transplant 2007; 7: 1047- 54.

2. Kranenburg L, Zuidema W, Erdman R, Weimar W, Passchier J, Busschbach J. The psychological evaluation of Good Samaritan donors: a systematic review. Psycholol Med 2008; 38: 177-85.

3. Potts SG. Assessing altruistic donation. Br J Renal Med 2009; 14: 26-9.

4. Novello AC. Quality improvement in living liver donation. Accessed March 16 2015. http://www.health.ny.gov/professionals/patients/donation/organ/liver/ 2015.

5. UK ODR Annual Activity Report 2015, section 5 (Kidney Activity) accessed at http://www.odt.nhs.uk/uk-transplant-registry/annual-activity-report/

6. Nadkarni A, Schartau P, Burnapp L, Santhouse A. Assessing potential nondirected

altruistic kidney donors: a case note audit. Br J Renal Med Summer 2012; 17: 19- 23.