Lt Col P SARKAR

MAJ R SHASHIKUMAR
 INTRODUCTION
Organ transplantation in humans has been there for few decades now. The huge strides
made in immunosuppressant therapy and surgical skill has improved survival of transplant
patients. However several workers since early days of transplant have recognised need for
psychosocial intervention, in view of the high rates of psychiatric co- morbidity seen in end
stage organ disease patients and in post transplant stage.

Moreover transplantation poses a series of hurdles for the donor, recipient and their
families, despite the fact that news of receiving a new organ itself is a powerful force that renews
the will to live.

The role of psychosocial intervention begins with management of end stage organ
disease, candidate selection to rehabilitation of patient and his/her family. These aspects shall
be elaborated in this article.

PSYCHOSOCIAL ASPECTS OF ORGAN DONOR

One of the most noble acts that a human can do for another suffering human is solid
organ donation of which renal donation is quite common.
Many a times when a relative needs a kidney to survive, family members impulsively
offer to donate one without stopping to consider the physical, emotional and financially
ramifications which can be quite considerable. So they need to be guided , as also any unrelated
donor.
Stressors or adverse effects likely to be experienced by an organ donor can be either
physical, financial & psychosocial.

Physical. Can be in the form of disfigurement, post operative fatigue etc.

Financial. Despite having reimbursement of hospital charges, non - reimbursable costs

of travelling , accommodation can be considerable , moreover multiple absences from job, post
-operative period of convalescence can result in monetary loss and in some cases even loss of
job. These can severely impact the psychosocial well being of the individual.

Psychosocial trauma would be also less if outcome of transplant is good, donor has
flexible defence, good mental health and mild compulsive traits. Donation to a sibling was
more traumatic than to a child/unrelated recipient . It has been noted that men are more
ambivalent than women about organ donation.

Traumatised donor may experience anxiety,depression,& sometimes when a potential

donor refuses he may experience severe guilt. Such trauma is favoured by pervious history of
psychiatric morbidity ,low self esteem, interpersonal problems, severe psychic deviancy..
Potential donors should be given adequate time not only to consider their decision but also to
prepare themselves for the actual donation. Supportive help should be offered both before &
after transplant.

Therefore evaluation of donor should look for

Psychological stability
Ability to give informed consent

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 Motivation
Family /social support
Coping skills
Financial impact & relationship with recipient

Potential disqualifying psychological factors in kidney donor are

- Evidence of coercion
- extreme financial hardship
- strong opposition by spouse
- significant psychiatric disturbance

Quality of Life : Despite the physical/psychological hardship most studies have reported
good quality of life post operatively. Most donors express a deep sense of gratification,.

PSYCHOSOCIAL ASPECTS OF A RECIPIENT OF ORGAN TRANSPLANT

The psychological experience of a patient undergoing organ transplant can be divided

into following stages. Pre-transplant or waiting period and post transplant period which is
further divided into immediate, early, mid and late phases.

PRETRANSPLANT PHASE

This is also known as the waiting period. This could be divided in to two phases viz.
during the end stage organ disease phase and post donor availability phase. During the end stage
organ disease phase, patient experiences strong denial and depression. High incidence of
suicide, withdrawal from treatment and fatal non-compliance is noted. Denial in a milder form
could be adaptive but when it is very strong could lead to mal-adaptation with treatment
program. If a end stage organ disease patient has normal anxiety, depression and personality
scores then he or she would be practising massive denial.

STRESSES OF HAEMODIALYSIS
Dependency-independency conflict
Patients tend to become dependent on the machine and staff, though their
personality yearns for independence.
Social- job loss, marital problems
Treatment related
-fluid restriction
-muscle cramps
-post treatment fatigue
-decreased sex drive
-needle anxiety
-uncertainty about future
Personality factors
Personalities marked by low frustration tolerance, acting out & non therapeutic denial
gain from assuming sick role and obsessive compulsive traits do not adopt well both in terms
of compliance and rehabilitation .
Helping them to adapt is essential for continued compliance.
Prompt recognition is important. Physicians should not be uncomfortable with patients
sharing in decision making process. Nurse can help them achieve mastery over the dialysis
regimen. Trusting communication between dialysis/transplant team & patient is important.

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Nurse and social worker should help sort out family support, adaptation to changed role
functioning. Psychiatrist and psychologist should be asked to provide valuable insights into
patient and their families’ psychological s reactions and coping mechanisms in adaptation.

STRESSORS DURING WAITING PERIOD( once transplant is finalised)

The fact that an ESRD or another organ failure patient has been listed for transplant revives
enormous hopes of living few more good years than having to deal with the suffering that
comes with dialysis and illness. They may become emotionally high or even euphoric. But some
patients will develop uncertainty about whether a donor organ will arrive in time, this is the
most important concern. This period is also known as ‘dancing with death’.

Patients are often hospitalised for prolonged periods prior to transplantation for
evaluation, repeated dialysis ,or even deteriorating general health. They come under severe
stress and may present with varied psychosocial manifestations. They have an increasing sense
of dependency, loss of control , especially in patients who primarily prided themselves on their
independence & self competency. Troubling information about others who are in need of or
have already undergone transplantation, or an unexpected death of a fellow patient can be very
disturbing. News that another patient received an organ despite a shorter hospital stay may bring
feelings of anger and distrust that are directed at the transplanting team. Some patients have a
guilt feeling that someone has to die to let them live when they are listed for a cadaveric donor.
Such patients may be affected by what is known as ‘gallows humour’ wherein they joke
markedly about traffic accidents, violent interactions. Some find relief in it & some become
distressed and quietly withdraw because of guilt or recrimination.

How to cope with such a situation. It is essential for care giver to have on open discussion
about all these, gallows humour especially. Reassurance by pastoral counselling, social worker
& additional education help dispel such thoughts. Critical care nurse can help patients cope
effectively by giving them an opportunity to express fears, anger, frustrations and
disappointments with an assurance that doing so will not jeopardise their chance to receive a
donor. Group psychotherapy moderated by a critical care nurse or psychotherapist with
knowledge of transplant will help allay many fears and doubts.

Scheduling routine time for meals, baths, rest and treatment help patients attain a sense of
normality. Posting of daily schedule, informing patients of upcoming disruptions due to tests or
procedures, helps patient maintain a sense of control. Permitting some flexibility & input from
patient into their daily routine helps retain their active role in their care . Encouraging more
number of family/friends visits , flexibility in visiting hour timings helps coping by patients.

Depression is common among patients awaiting transplantation. Untreated depression

increases potential for maladaptive coping behaviours such as regression, non compliance,
hostility and premature hopelessness, which can have an adverse effect on patients outcome by
increasing rates of morbidity and mortality. How to diagnose depression? Somatic symptoms
could also be due to underlying illness but persistent sadness, hopelessness, anhedonia,
depressive cognition of helplessness, hopelessness, guilt which is excessive or inappropriate,
worthlessness, suicidal ideation indicate depressive episode. Anhedonia can be discerned by
patients lack of interest or any enjoyment in time spent with family or friends. Family history of
depression increases chances of developing pretransplant depression.

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Anxiety during pretransplant, phase .
Anxiety could be due to various physical or psychological features .

Physical factors include. Psychosocial factors includes

Angina Hospital environment
Medication effects Isolation
Metabolic disturbances Loss of control
Poor ventilation Death and dying
Itching Threats to bodily integrity

Loss of job .

Lack of correct information about their illness or upcoming transplantation .sometimes patients
get half or incorrect information regarding causes of failure in other patients and become
anxious.

What to do ?
Environmental manipulations Relaxation therapy
Listening to radio Education
Watching television Psychotherapy
Interaction with visitors
Delirium

Causes – infection
Hypoxia
metabolic disturbances
It is important to recognise it early. Best way to do it is by assessment of mental status using
MMSE during each shift change by critical care nurses.

Treatment with drugs

SSRIs among antidepressants are highly effective for management of depression though
they may have some minor adverse effects initially they tend to reduce over time . Doses of
protein bound drugs need to be reduced concomitantly with SSRIs . Bupropion is effective in
patients with apathy and marked inaction , however is contraindicated in those predisposed to
seizures. Benzodiazepines especially lorazepam are highly effective in managing anxiety . But
due to its risk of causing respiratory depression in some Buspirone can be considered. Delirium
can be controlled by using low doses of neuroleptic Electroconvulsive therapy can be considered
in severely depressed, acutely suicidal or those patients in whom drugs could have severe
adverse effect

Financial stressors during waiting period.

Need to arrange for cost of transplant which can be prohibitive. Often it is availed but
certain cost are incurred which can not be reimbursed like .
Repeated long distance travelling to treatment centre
Cost of accommodation and dinning of relatives/caregivers.
Cost of providing a gift for the donor even for sibling donor
Cost of impending post transplant visits and medication .

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COMPLIANCE

Compliance in medical terms means faithfully adhering to a regimen provided by a doctor or

nurse. Kiley et al have reported that males are more likely to be non-compliant with medication
and females with diet.
Factors associated with non-compliance are

1 increased number of prescription medicines

2 depression
3 loss of control attributed to powerful others
4 unemployment
5 perceived diminution of social & family support
6 memory impairment
7 lack of education in regard to self care post operatively
8 Personality traits and socio-cultural factors.
Compulsive patients are ideal for transplantation as they are more likely to be compliant
Anti social patients have more non compliance due to their marked disruptive,
manipulative or un co-operative behaviours.
9 History of substance use /abuse
10 Lack of adequate social/family support

ASSESSMENT OF COMPLIANCE
Should include attention to
Patterns of adherence to appointment
medication
medical advise
Especially regarding the individuals ability to cease harmful habits such as nicotine and alcohol
use , as also ability to incorporate dietary and exercise advise .
Non compliance or poor compliance is responsible for up to 25% of deaths in transplant patients
after the initial recovery period.
Characteristics of noncompliant patients
Studies have shown an association between non compliance
and increased mortality. There is a higher incidence with: - depression
unemployment
perceived diminution of fam/social support
impaired memory
personality traits

EVALUATION OF A RECIPIENT FOR ORGAN TRANSPLANT

The importance of psychosocial assessment in the candidate selection stems from the fact that
significant psychiatric co-morbidity is seen in end stage organ dysfunction. Issues such as non
compliance with treatment have strong psychosocial bearing as brought out earlier, and there are
a multitude of neuropsychiatric adverse effects of post-transplant medication. More importantly
the rates of post transplant morbidity &mortality are significantly affected by psychosocial
factors.

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 The role of comprehensive psychosocial evaluation in recipient selection is to
define an individual’s risk factors for having difficulty in the post operative period while
recognising their strengths.
It revolves mainly around assessment of psychiatric, psychological, social factors and
competency to give consent.

COMPETENCY TO GIVE CONSENT

To be competent he needs to
Understand the medical need for transplantation
The risks involved in the procedure
The risks involved in rejecting the procedure
Medical conditions that render a patient incapable of giving a competent consent are
Severe hepatic/ uraemic encephalopathy
Cardiogenic shock
Hepato-renal syndrome
Uraemia
Medication toxicity( lidocaine, nitroprusside).

PSYCHIATRIC EVALUATION
Should include evaluation for presence of significant axis 1 / axis 2 disorders, Cognitive
impairment.Axis 1 disorders are generally associated with poorer psychosocial adjustment and
health status, while Axis 2 disorders are associated with compliance problems. Apart from a
detailed clinical interview to asses the patient various screening instruments are available to
evaluate these patients. They are Psychosocial assessment for candidates for
transplantation(PACT) ,the Transplant Evaluation Rating Scale(TERS) & Structured Interview
for Renal Transplant(SIRT).

PSYCHOSOCIAL EVALUATION OF PATIENTS FOR TRANSPLANT (HOUSE 1993)

Patient profile, relationship, educational, work and legal history.

Organ failure cause, complication, course, compliance with treatment.
Means of coping with illness, past and present.
Expectations of surgery, including fantasies.
Support of family, friends, church and employment.
Existing psychiatric difficulties and treatment plan.
Past psychiatric history.
Family psychiatric history.
Substance abuse history.
Mental status exam : consider neuropsychological tests.
Understanding of procedure and competence to sign informed consent.

PSYCHOSOCIAL SCREENING CRITERIA FOR SOLID ORGAN

TRANSPLANTATION( STROUSE ET AL 1996).

Absolute Contra indication.

Active substance abuse.
Psychosis significantly limiting informed consent or compliance.
Refusal of transplant and for active suicidal ideation.
Factitious disorder with physical symptoms

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Relative Contraindications.

Dementia or persistent cerebral dysfunction if adequate psychosocial resources to

supervise compliance are not available or of a type known to correlate with high risk of adverse
neuropsychiatric outcome.
Non compliance with transplant system, unwilling to participate in necessary psycho
educational psychiatric treatment including treatment. refractory psychiatric illness such as
intractable life threatening mood disorder,schizophrenia,eating disorder, personality disorder.

Social support assessment should include

Availability of family members
Self support groups
A primary care giver who can help with visiting hospital on schedule taking medication
supervising patient’s overall well being. These aspects should be explicitly discussed with the
patient and care giver.

MOTIVATION
To undergo transplantation is also an important tissue. Are they undergoing the procedure
for their own benefit or if other family members, employees, third persons are coercing them for
their own interests.

COPING STRATEGIES

Employed by the patient, his family members to the current illness or any previous illness
should be assessed especially in relation to substance abuse & compliance.

QUALITY OF LIFE
It is important to assess this aspect because
High cost of procedure
The risk involved
Strict compliance regimen needed post operatively
Should be able to deliver a significant improvement of quality of life post transplant
despite the inconveniences. Therefore it should be assessed pre & post procedure.

POST TRANSPLANT PSYCHOSOCIAL EXPERIENCES OF PATIENT

It can be grouped into immediate, early, middle & late stages.

Immediate stage.
Patient is anxious , would prefer to sleep rather than face the activities demanded
of him, or face the humbug of the machines , doctors & nurses that surround him. Clinically
delirium is common in this stage. Patients may repeatedly enquire about the gadgets around
them, condition of their kidneys.

Early stage
Transplant patient may respond with euphoria or hypomania on realising that the
organ is beginning to function. It is important that positive emotional ties are formed now. Then
patient becomes calm and experiences a comfortable sense of well being. However if rejection
occurs this tranquillity can rapidly change to panic and terror. Even minor changes in renal
function tests can precipitate severe panic/ depressive episode. Therefore it is important to

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discuss these aspects much before the transplant. Patients may employ denial as defence
mechanism during this phase, become pessimistic &feel abandoned by the staff. Depression is a
real reality during this stage. Other factors that contribute to onset of depression are
past/family h/o depression
Poorly controlled pain
Substance abuse
Social isolation
Financial stress
Drug effect steroids, cyclosporine
Low preference for health related knowledge prior to procedure predicts
likelihood of development of post operative depression. Depression can have negative impact on
emotional well being & ability enjoy post transplant life. Depression can decrease immune
system functioning, intensify health risk & possibly decrease survival. However it is important to
note that depression is very much amenable to treatment by psychosocial modification, anti
depressants and electroconvulsive therapy if required. Allowing the patents to express their
feelings ,both positive &negative, will significantly reduce chances of depression.

Middle stage ( 2-6 weeks)

Patient tends to focus on future and formulates plans for a life of independence & greater
freedom. Some experience guilt feelings in regard to the donor especially if the donated organ
had been cadaveric. Efforts to meet the donor/their families help resolve such issues. Sometimes
feelings of real or fantasised relationships with donor could give rise to anger, frustration and
depression. Positive emotional ties with staff help resolve such issues. Headache and fear of
rejection of organ is an important part of this stage. Fear can give rise to intense anxiety, social
isolation. They can have anxiety about medication regime and its side effects, uncertainty of
future and finances.

Late Stage.

Patients are concerned about their self body image either due to scars of surgery or
adverse effects of medication eg hirsutism weight gain, sexual dysfunction. Sexual dysfunction is
very important and its persistence significantly reduces quality of life and may cause depression.
Fear of rejection and stressors of middle stage continue to persist. In addition some may have
difficulty in readjusting to normal life. Dependent personality patients tend to assume to sick
role despite having significant improvement in quality of life. Some have strong denial of the
adverse effects of medication and any dysfunction especially sexual and not discuss with care
giver lest the later be further burdened. Hence providing these people a safe outlet of emotion
with treating staff, social support groups and social worker is helpful. The availability of social
net working, peer relations helps better rehabilitation and improved quality of life.

Quality of life is definitely better in post transplant patients irrespective of age, type of organ.
This has been corroborated even in Indian studies. clinicians should actively solicit information
about adverse effects of medications, particularly about sexual, relationship issues, appearance
concerns,& physical activity.

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FAMILY, CARE GIVERS – BURDEN, QUALITY OF LIFE AND HEALTH.

There have been varying reports in this regard. Whereas in most of the successful cardiac, lung
and hepatic transplant quality of life has improved, the same may not be true in renal transplant.
In fact Weeks et al have reported increased burden, whereas Lindquist et al have reported that
male spouses used significantly less optimistic, supportive and palliative coping than did female
spouses. Emotive, evasive and fatalistic coping which are less than optimal ways to deal with
stressors occasioned by the partner’s treatment. The spouses of renal transplant patients have
better quality of life than those of continuos ambulatory peritoneal dialysis and haemodialysis
patients.

Stressors are
Handling pre operative stress of patient.
Pressure of finding a donor.
Becoming a donor.
Fund raising.
In the post operative period.
Change in daily routine.
Change of role playing at home.
Absence from job.
Staying away from home.
Fear of loosing the loved one.
Coping with uncertainty.

Health related concerns are more stressful than others.

All these can be quite distressing also because they cannot discuss with the patient. Hence
education, monitoring of family interaction, referral to social worker, support group, psychiatric
intervention will help resolve their problems. It is essential to help them develop positive coping
skill strategies for compliance of patient strongly depends on improved quality of life of the
family and care giver. Problem solving& self controlling coping strategies are more useful.
Marital therapy may be required in cases where a bad marriage is likely to break. Families of
donors also go through significant stressor especially if the donor is the earning member of the
family. Development of a positive relationship with patient and his family help better out come
of transplantation.

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PSYCHO SOCIAL EFFECTS OF MEDICATION.

Immune suppressants can be very challenging for their likely to cause mood swings, sleep
disorder, sexual dysfunction cognitive dysfunction, decreased coordination, tremors and
hallucination. They are more pronounced if patients have had pre operative difficulty.

DRUG DOSE-NORMAL DOSE-FOR RENAL FAILURE

RENAL FUNCTION GFR
10-50ML/MIN <10ML/MIN

FLUOXETINE 20mg/day 100% 100%

BUPROPION 100mg 8hrly 100% 100%

IMIPRAMINE 25mg 8hrly 100% 100%

NORTRIPTYLINE 25 mg 8/6hrly 100% 100%

BUISPIRONE 5-10mg 8hrly 100% 50%

ALPRAZOLAM .25-5mg 8hrly 100% 100%

DIAZEPAM 5-40mg/day 100% 100%

LORAZEPAM 1-2mg12/8hrly 100% 100%

HALOPERIDOL 1-2 mg tid/bd 100% 100%

LITHIUM 900-1200 mg/day 50-75% 25-50%

DRUG PROTEIN BOUND NEED TO REDUCE DOSE

VENLAFLAXINE <35 % YES

SERTRALINE 95% INSUFFICIENT DATA

CITALOPRAM 80% INSUFFICIENT DATA

CONCLUSION
Consultation liaison psychiatrists should be able to diagnose, asses, formulate a case and
implement specific treatment programs. The usefulness and cost effectiveness of a close liaison
of transplant teams with psychiatrists is very well established. It benefits not only the outcome of
the transplantation in the recipients but also the donor, their families and caregivers. Sometimes
even the transplant team may need psychological support to cope with the pressures of their job.

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 Organ transplantation has been known since time
immemorial. Even our mythology has evidence to that.
Lord Shiva effected head transplant for his son Ganesha.
But then it has been a real thing for us only in past few
decades, yet the huge strides made , makes transplant look
like playing God.

Organ transplant involves a lot of emotional activity on

part of donor, recipient and their families. Florence
Nightingale had pointed out that apprehension, uncertainty,
waiting, expectation & fear of surprise do a patient more
harm than any exertion.

The procedures and medications have increased

survivability, but has considerable financial implications.
Thus actual success shall depend on being able to deliver a
better quality of life. Herein, comes the role of psychiatrist
and psychologists. They can help the transplant team in all
aspects of organ transplantation like selection of donor,
recipient, helping families and patients cope up with the
stressors.

Thus as psychological warfare is used as a force

multiplier, the role of psychiatrist in organ transplant team
can help enhance the quality of life. It is just not enough to
add years to life. It is equally important to give life to the
years added

Maj R Shashi Kumar shall be elaborating on various

psychosocial aspects of organ transplant.

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