Grief Counselling Manual

Aravind Eye Care Systems

In the global figure of blindness rapidly approaching 40 million, attention is naturally focused on Cataract, which is responsible for 50% or more of all visual disability, and trachoma which is still an enormous public health problem affecting 500 million people worldwide and responsible for 25% of all bilaterally blind individuals.  

Corneal blindness in the developing world has a tremendous impact both on the quality of people’s lives and related economic issues. Corneal blindness is at least 10 times more common in the developing world than in industrialized nations. Diseases affecting the cornea are major cause of blindness worldwide, second to cataract in overall importance. The epidemiology of corneal blindness is complicated and encompasses a wide variety of infectious and inflammatory eye diseases that cause corneal scarring, which ultimately leads to functional blindness.  

 There are around 2.5 million people are affected by the disease of the cornea and are still waiting for the corneal tissue. Significant advances have been made in the field of eye banking and innovative strategies have been adopted to increase the number of donor eyes. With all these advancements and innovations, the gap between the demand and supply of the corneal tissue is still wide.

Causes of corneal blindness

  • Injury to the eye
  • Infections
  • Chemical burns
  • Congenital disorders

What is eye donation?
Donating eyes after death is eye donation.

Why is eye donation necessary?

Number of people blind in India

- 120,00,000

Number of people blind due to corneal diseases

-  20,00,000

Number needing corneal transplantation

- 10,00,000

Annual requirement of eyes

-  75,000– 1,00,000

Present procurement of eyes

-  22,000

Who can donate eyes?

  • Any age group and gender
  • Spectacle wearers
  • Diabetics, hypertensive patients and asthmatics

Who cannot donate eyes?

Those with

  • AIDS, hepatitis B & C, rabies
  • Septicemia
  • Acute leukemia
  • Tetanus, cholera
  • Infectious diseases like m eningitis and encephalitis  and
  • Death due to unknown cause.

Treatment for Corneal Blindness
Corneal blindness can be treated through replacement of corneas (corneal transplantation) from donor tissue, obtained through e ye donation.

Corneal Transplant
A corneal transplant involves replacing a diseased or scarred cornea with a new one. When the cornea becomes cloudy, light cannot penetrate the eye to reach the light sensitive retina. Poor vision or blindness may result. In a corneal transplant surgery, the surgeon removes the central portion of the cloudy cornea and replaces it with a clear cornea, usually donated through an e ye b ank. A trephine (a tool used in operation theatre to cut the cornea ) is used to remove the cloudy cornea. The surgeon places the new cornea in the opening and sews it with a very fine thread. The thread stays in for months or even years until the eye heals properly. Following surgery, eye drops to help promote healing are necessary for several months.

Hospital Cornea Retrieval Programme (HCRP)

To address the non- availability of quality corneal tissues, The Eye bank Association of India (EBAI) came up with a new strategy called the Hospital Cornea Retrieval Programme (HCRP). The HCRP programme was initiated by Ramayamma International Eye Bank (LVPEI) in 1990 and has recorded a high yield of donor tissues recovered through HCRP.

A social worker makes a sensitive and timely request to the family of the bereaved in a hospital setup to make an eye donation, and if consent is given, organizes  for quick eye removal, so that the family is not inconvenienced.

Need for Hospital Cornea Retrieval Programme (HCRP)

Currently 90% of eye donation is from voluntary aged donors who die in their homes.

Only 30-40% of the eyes are used for transplantation. The reason being:

  • Longer death-to-enucleation time
  • Age of the donor
  • Non-availability of complete donor medical history

Advantages of Hospital Cornea Retrieval Programme

  • Access to younger/healthier tissue
  • Availability of donor history which allows better tissue evaluation
  • Reduced death- to- enucleation time
  • Cost effective

Counselling Definition :

A relationship between the counselor and the client, wherein the counselor enables the client to make a realistic decision and act on it.

It helps the counselee

  • Understand themselves better
  • Inform them of their own needs
  • Strengthen limitations
  • Make them understand the resources they can avail of

Goals of Counselling

  • Behavioural change
  • Problem resolution
  • Personal effectiveness
  • Decision making

What leads to good counselling?

  • Personal qualities
  • Counselling skills
  • Institutional support

Personal Qualities

  • Respect for the rights and dignity of other people
  • Honesty
  • Empathy
  • Emotional stability
  • Active listening
  • Ability to maintain confidentiality
  • Ability to express ideas clearly

Communication Skills

  • Active listening
  • Attending behaviour
  • Questioning
  • Summarising and paraphrasing
  • Reflecting feelings
  • Giving information

Room Arrangement

  • Private and comfortable
  • Seated as close as possible
  • Body language
  • Language - the choice of words, endure that communication is understood . The details of the donation need to be expressed in a language understandable to the donor .

What is Grief Counselling?

Grief is defined as a state when one experiences loss or a distressing situation. Communicating with the family at this point of time to motivate them for eye donation is “Grief Counselling”.

Reasons people refuse to donate eyes

  • Common myths and misconception
  • Lack of information about the process
  • Inactive role of the eye banks
  • Lack of clarity of the nature of eye banks and their functions

Role of social workers

  • Request family members of the diseased patients in the hospital for eye donation
  • Liaise with the c oordinating nurse to collect information about deaths from the m ortuary
  • Motivate the entire hospital team
    • Physicians/surgeons
    • Hospital nurses
    • Handle crisis
      1. Unanticipated crisis
        • Retrieval of cornea even though it is pledged
        • Sudden deaths
      2. Anticipated crisis
        • Motivating terminally ill to pledge/donate eyes

    Approaching a Donor family

    The first step is approaching the donor family is to contact the Ward Nurse-in-charge of the diseased to identify the decision maker in the family.

    • The Grief Counselor (GC) shall not present the matter in a hurry to the family member. He/She shall wait until the family members are found mentally relaxed.
    • The GC shall introduced himself/herself by name and the eye  bank he/she belongs to and begin counselling.
    Once the family is aware of eye donation and expresses interest, the process of enucleation and the need to bleed 10cc of blood from the deceased should be explained.

    Process involved in obtaining consent for eye donation

    • Conversation/communication with the donor family
    • Introduction – Counselor introduces himself/herself
    • Expresses of sympathy
    • Talks about the donation
    Inform the family about the magnitude of the problem and the difference they can make by donating eyes.

    Talk about the facts of eye donation

    1. No disfigurement
    2. Takes only 30 minutes
    3. No delay in funeral arrangements
    4. Confidentiality about the donor and recipient
    5. Certificate of Appreciation
    6. Assurance that eyes are not sold

    Express gratitude for listening patiently

    Provide pamphlet and phone number for further details/contact.

    Steps in obtaining consent

    • Understanding and sharing the grief
    • Learn as much information as possible from the family
    • Understand the situation of grief
      • sudden death
      • young patient
      • head of the family
      • terminally ill
    • Get consent within the hospital
    • Explain the process of eye donation, and the functions of the eye bank
    • Allow the final decision making to the family

    Points to be emphasized during counselling

    • Benefit to two blind individuals
    • Absence of mutilation
    • Cornea is the only part used
    • No delay in funeral ceremony

    Outcome of counselling
    Positive Reactions from the Donor family :

    • Good listening from the side of donor family.
    • Understanding the noble purpose and need for eye donation.
    • Enquiring more about Eye Donation before and after happenings. 
    • The Family members voluntarily calling other decision makers of the family and involving in Family Discussion regarding Eye donation.
    • Accepting the fact and giving consent for eye donation.

    The family may show these kinds of Negative reactions also Like :
      • Protest
      • Despair
      • Detachment
      • Delayed reaction

    (In Such cases, the counselor can try to get the help of the Doctors and Nurses in the hospital if they had good rapport with the family.)

    Attributes of a Grief Counselor

    • The counselor should be committed to the cause of eye donations.
    • The eye donation counselor or grief counselor should be well-informed about the facts of eye donation.
    • The counselor should possess knowledge about know the types of blindness and its management and statistics about corneal blindness and eye donation at the local and national levels.
    • The counselor should be aware of eye banking practices and procedures and the beneficial value of eye donations.
    • The counselor should possess good communication skills and should be fluent in the local language.
    • The counselor should take the initiative in approaching the donor family relatives and the relatives of the terminally ill patients for eye donation.
    • The counselor should develop a good relationship with the hospital authorities and staff working in the ICU, Accident and Trauma wards.
    • The counselor should carry valid identity cards .
    • The counselor should be dressed professionally. He must be calm and attentive.

    Grief Counselling Techniques

    • The Grief Counselor (GC) shall talk to limited family members in an ideal surrounding.
    • The GC shall only talk to those who are found supportive to the cause.
    • The GC shall provide comfort, moral support and sympathy to the family members while attempting to motivate them for eye donation.
    • The GC shall respect the feelings of the family members.
    • The GC shall have adequate knowledge about the myths and facts about eye donation.
    • The GC shall assure the family members that there will be no delay in making funeral arrangements.
    • The GC shall give adequate time for the family members to discuss and decide about eye donation.
    • The GC shall express his/her gratitude to the family member upon obtaining consent.
    • The GC shall express his/her gratitude to the family members of the deceased even in the absence of obtaining consent for eye donation.
    • The GC shall never insist that the family donate eyes.

    Procedure for surgical removal of eyes for donation

    Corneal Excision
    Following slit lamp ev aluation the cornea is excised from the e ye b all and stored in a preservative medium. The preservative medium used is Mc Carey Kaufmann (M.K) medium in which the cornea can be stored for a period of four days. 

    Endothelial cell analysis
    The endothelial cells of the donor cornea can be viewed under a Specular microscopy to analyse its:

        • Cell density - ideally it should be > 2000 (PKP)
        • Hexagonality of the cells should be more 50%

    The 5cc of blood collected from the donor is tested for:

    • Human Immuno Deficiency virus (AIDS)
    • Hepatits B
    • Syphilis

    Forms to be filled :

    Consent form: It should be signed by one next of kin and two witnesses. Consent should be obtained before enucleating the eyes from the donor.
    Daily work report: It documents the daily workload of the counselor, the number of deaths witnessed on that particular day.
    Case summary: It documents the details of the donor family counseled and the process of the counselling.
    Monthly report: It documents the number of deaths declared in a month, the number of families counseled, counselling process and the details of the donor families.