Transplantation is a lengthy process that is broadly divided into six main stages. As the process unfolds, patients and their families often experience a range of physical, emotional and behavioural difficulties. Whilst this is not necessarily the case, it is nonetheless routine practice to offer psychosocial assessment and care at each stage. This is thought to be most crucial during the pre-transplant phases.
Stage 1: The initial discussion
The introduction of transplantation as a treatment option can be a distressing experience for patients and their families. Individuals often have a range of feelings including, shock, denial and anger. Patients and relatives often want to know “are we really at this point?”, “do we really have to rush into this?” and “how much time do we have to decide?” At this stage, individuals must be given plenty of opportunity to discuss their thoughts and feelings with various members of the team.
Stage 2: The decision
Making the decision to proceed with the assessment can place families under enormous stress. Obtaining information and speaking to patients who are either on the waiting list or have received a transplant is important and can be helpful.
At this stage patients and their families are routinely offered a psychosocial assessment. This involves family and individual interviews with the local psychosocial team. It is also usual that individuals are asked to complete a range of short questionnaires. The main aims are to evaluate:
• individual family member’s views, thoughts and feelings and to provide further information if required
• the patient’s quality of life and how they are currently coping with illness
• the family’s coping mechanisms, available sources of support and resources and their ability to cope (practically and emotionally) with the demands of the transplantation process
• factors that may prevent the patient from receiving the maximum benefits of a transplant (e.g. difficulties in fully adhering to treatment, extreme emotional difficulties)
This information is made available to the team at the transplant centre. IT DOES NOT AFFECT THE DECISION TO ACCEPT PATIENTS. Instead it helps identify potential difficulties and enables professionals who will be familiar to patients and their families to respond accordingly (e.g. counselling and practical support).
Stage 3: The assessment
Once the decision has been made to proceed with the transplant assessment, a referral is made to a transplant centre (e.g. Great Ormond Street Hospital, London; Freeman Hospital, Newcastle; or Papworth Hospital, Cambridge). For the assessment patients and their families stay for approximately four days at the transplant hospital, where accommodation is provided. Here everyone meets the transplant team and has the opportunity to ask questions and discuss any concerns. The patient undergoes a series of tests which are similar to those they have at routine out-patient. The results of these tests are then discussed and one of three options is decided upon:
• Patient Not Accepted: sometimes patients are not considered to be suitable for transplantation for medical reasons. It is estimated that between 4% and 10% of candidates are not suitable and it is crucial that these individuals are offered emotional support.
• Patient Provisionally Accepted: in other words, the patient is a suitable candidate for transplant but is too well at the present time.
• Patient Actively Accepted: if the patient is put on the active waiting list, more detailed information about the next stage is provided by the transplant team.
Stage 4: The wait
The average waiting period is now two to three years. At this stage patients must be contactable at all times and are usually given a ‘bleep’. The uncertainty of this phase can again be very stressful for patients and families. Further psychosocial assessment takes place at regular intervals and rapid access to support is made available. Common emotional problems arise from avoiding infections (isolation), increases in treatment (which can be time consuming and exhausting), maintaining meaningful social ties (with family and friends), dealing with jealousy (“why did Gordon get called before me?”) and keeping hope alive.
Stage 5: The call
Patients and their relatives often remember in considerable detail where they were and what they were doing when the call came for transplant (even in the case of false alarms). Later, if this imagery were to become distressing, brief psychological work can be effective.
Stage 6: The operation and beyond
The day of surgery is followed by a short period in intensive care and inpatient post-operative care. At this stage it is important to support relatives and ensure that they have sufficient practical help (e.g. child-care). Accommodation is provided at the transplant hospital for a close relative during this period.
Physical recuperation is variable. Some patients do so rapidly. For others this process can take time. Emotionally, this can be a ‘fraught’ period with increased health anxieties and hypervigilance (“what if something goes wrong?”, “what if I pick up an infection?”, “I have a high temperature- does that mean I’m going into rejection?”). Patients often undergo a re-appraisal of ‘who they are’ (often referred to as ‘identity modification’). Consequently, further psychosocial assessment is offered and again, counselling or psychotherapy made available if necessary.