Bereavement follow-up service in intensive care

Bereavement

follow-up

service in intensive care

lsobell Jackson

Following the death of a patient nurses sometimes wonder later how the surviving relatives have coped with the death of their loved one and whether there was any further help that could have been given. This report describes services available to bereaved relatives in Intensive Units (ICUs) throughout the UK and how, with limited resources, a formal follow-up service to all bereaved relatives can be achieved.

INTRODUCTION Care of relatives in critical care areas is often of a very high standard, despite the traumatic and high-tech circumstances these people often find themselves in. Critical care nurses encompass the relatives within a caring protective blanket, acknowledging their fears, needs and emotions whilst their loved one is within the ICU. However when their spouse or relative has died the unit doors close, with the deepest sympathy. In the Darlington Memorial Intensive Therapy Unit (ITU) we have on occasions remained in contact with relatives with whom a special bond has developed following the long-term ICU care of their loved one, continuing support until it is no longer required. But this has always been sporadic and many relatives of short-term admissions receive very little support following a death. There is much research on the grieving process; Kubler-Ross (1969), Worden (1987) and

Isobali Jlc&on RGN ENB 100,998,931, Clinical Nurse Specialist, ITU, Memorial Hospital, Dartington, Co Durham (Requests for offprints to IJ) Manuscript

accepted 22 April 1992

Care

Parkes (1972), amongst others, describe the stages and tasks of grief. It has been well documented that sudden and traumatic death can be an antecedent to problematic recovery for the survivors. Worden (1987) suggested that follow-up care should be given as part of the on-going care for survivors of sudden death. Wright (1991) describes the care needed for relatives following sudden death in an accident and emergency department, and suggests that the relatives be allowed to revisit the department as it helps them to review the day’s events. Although relatives are supported at the time of a sudden death and given practical information it is very common for them to remember none of it, according to Laurent (1991), who recommends the availability of a grief support nurse who will visit the relatives at home to offer further support. The needs of the relatives in an accident and emergency department have also been considered by McGuinness (1986). She concluded that the relatives should be provided with the Department of Health and Social Security (DHSS) pamphlet ‘What to do after death’, and that nurses should: 1. ensure that there is available transport home and someone nearby for the first evening 163

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for the 2. give a name and phone number relatives to contact if needed and offer to phone them the following day 3. contact the general practitioner (GP), district nurse, or health visitor and if necessary do a follow-up visit to the relatives. .In the USA, Collins (1989) has developed a Sudden Death Counselling Protocol for ICUs, and states that families need follow-up by a nurse or chaplain within 2 weeks of the death. She believes in the team approach including a nurse, chaplain and physician. When reviewing the care of bereaved relatives one obviously must also consider their needs prior to the death. Hampe (1975) identified by research 8 needs of spouses of terminally ill people during and following the death of their spouse. Care plans to meet such needs may be used for all relatives of patients in an intensive therapy unit (ITU) (You11 1989). For many years now members of the hospice services have led the way in care of bereaved relatives, with the use of volunteer bereavement counselling services run by trained counsellors. Cameron and Parkes (1983) showed that relatives of patients in an acute ward developed a higher incidence of irritability, anger, and hostility to others with an increase in the number of tranquillizers and disturbance of sleep patterns, as compared with relatives of patients in a palliative care ward. It appears that relatives of those who have died, or soon will, have special needs which are not always met. How then, with limited resources, can we improve care of the bereaved? I have frequently wondered about the fate of those who have left my care once the ward doors have closed, when the blanket of support is removed. So it seemed worthwhile to investigate current limitations in care and how, within resource limitations, better care can be provided for such people.

Fig. 1 Bereavement follow-up questionnaire 1. Do you have any follow-up service for bereaved relatives in your ITU?

Yes

No

2. Do you send a letter or card of condolence to the relatives?

Yes

No

3. Do you phone relatives following the death of a patient?

Yes

No

4. If so, how many weeks/days following the bereavement do you leave before phoning?

simple questionnaire (Fig. 1) was circulated to the senior sisters of 100 general ICUs in the UK. These were chosen at random from The Directory of Emergency and Special Care Units. There was a remarkable 88% reply rate within 2 months of the questionnaire being circulated. The majority of the replies were returned anonymously with approximately 10% giving additional information and/or samples of leaflets, letters and booklets used within their units. 56% (49) of the units from which data were obtained had no follow-up service for relatives in any form. A total of 32% (29) of units offered some sort of an informal follow-up service, with a variation of facilities ranging from cards or letters of condolence to an occasional phone call; some offered assistance by the offer to talk at any time, or by staff attending the funeral. One unit was hoping to set up a support group for the families and one followed-up long-term patients and children. Only 12% (10) of the units which responded had a formal bereavement follow-up service for relatives, and most of these have the services of a bereavement nurse/social worker available. It appears that the follow-up services available are limited to health authorities with counselling facilities available and the majority of units are only able to offer limited services to the bereaved families, which seem to depend on the length of stay of the patient and the relationship developed between the staff and the family (Fig. 2).

METHOD

Ways of improving care for the bereaved

In July 1991, to investigate the extent of the services available within the critical care field, a

Bereavement counselling is a highly specialised subject and should not be tackled without formal

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Fig. 2 Bereavement

follow-up services ICUs.

# of rrrpondenta

80

60

40

30

20

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There are also various help groups available (see Appendix for addresses). it is essential when using these groups to be assured of their competence in dealing with distressed relatives, especially if the group concerned is a local independent support group rather than a recognised national association. We have now developed links with the nearest G-use organisation to gain an insight into the group and how it may help with relatives if necessary. If bereaved people are to receive as much help as possible for ICU staff then care must be planned and coordinated. The following protocol has been devised for this purpose.

Protocol for care of relatives in the ITU Darlington Memorial Hospital

10

0 None

Informal

Type of bereavement

Formal

service

training, however anyone has the ability to listen and show empathy to another’s grief. It is with these skills and other resources available that we in Darlington ITU hope to aid the relatives of our patients. First, one has to explore the availability of these resources and their possible contribution. It is futile to volunteer a follow-up service if there are no available means of help to offer. The chaplaincy staff are often a great means of solace to many people with religious beliefs, but they can also be willingly utilised as general comforters to others in times of distress when nursing and medical staff are engaged in patient care. Social workers are a useful resource for families in distress. However unless one is lucky enough to be within one of the relatively few health authorities that employ a bereavement nurse/social worker, the social work department will have difficulty in taking on the added workload entailed in a bereavement service. Nevertheless social workers are a valuable source of information that can be utilised. The Citizens Advice Bureau is another helpful agency that may be suggested to relatives as a means of obtaining advice on practical matters.

All patients admitted to the ITU should have a family care plan (Table). This has been adapted from Youll’s (1989) adaptation of Breu & Dracup’s (1978) work, and can be completed to accommodate the needs of the relatives (or close friends, here included under the term relatives) and used with a genealogical identification chart (Fig. 4) to help staff remember relationships. Specific relatives should be given a card with the unit direct line telephone number.

Following the death of a patient The spouse or identified carer should be given the name and contact number (ITU) of the nurse who is willing to take responsibility for following up the family. The DHSS booklet ‘What to do after death’ should be offered to the relatives. The responsible nurse should complete a bereavement card, giving brief details of the patient, age, diagnosis, date of death, identified next of kin and any other relevant information e.g. sudden death, or anger at lack of diagnosis. This card should then be filed in an indexed file box. The family care plan is to be filed separately but remain accessible for future reference. As soon as possible following the death of the patient, the identified carer should be sent a letter of condolence, signed by a senior member of staff. 2-3 weeks following the death the

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T8biO Family can plan Problem 1. Need for relief of initial anxiety

2. Need for information

Goal

intervention

Relatives understand that all possible care is given and are fully informed of progress of patient and routines of unit

Orientation of family to staff, unit, visiting policy, phone number, bedside equipment, doctor coverage

Family will be kept fully informed of progress of care

Arrange for phone calls to be made at times convenient to the family

Assure family of care given and that patient will be kept free of pain and comfortable. Repeat all information as needed

At..

. . . .a.m./. . . . . p.m.

Give clear and understandable

explanations

Talk with family/spouse away from bedside (approx.) 15min morning and evening. Repeat all information as necessary 3. Need to be with patient

The family will achieve the maximum amount of visiting time to satisfy their and the patient’s needs

Explain the opening visiting hours with best possible times for visiting The hours the family are most likely to visit are . . . . . . . . . . . . The spouse is staying at.

. . . . . . Tel. . . . . . .

Give explanations whenever asked to leave the room

possible if family is

Place chairs at the bedside 4. Need to be helpful

5. Need for support and ventilation of emotions

The spouse/family will partake in as much care of the patient as they would wish

Explore with spouse/family the possibilities of patient care that they would like to assist

The spouse feels that they are fully supported by staff and have sufficient time to express feelings

Talk with spouse for approx. 15min away from the bedside. Explain that this is to find out how the spouse is doing as well as give information about the patient

Offer assistance and guidelines to the when assisting with care

spouse

Provide for continuity of care as much as possible

responsible nurse, or if unavailable her deputy, will telephone the spouse and initiate any followup service if necessary. When making the telephone call the nurse should identify himself/herself and where the call is from, enquire if the person has received the letter of condolence and then proceed with the conversation by asking how the family members are getting on. The outcome of the phone call cannot be predicted, but it is useless to call if at the end there is nothing to offer. Therefore the nurse must be prepared to suggest several options: 1. Another phone call 2. A visit to the unit to discuss any queries over the patient’s care

3. The Citizens Advice Bureau for practical help 4. The Chaplaincy for spiritual guidance or help 5. Their own doctor for any medical disabilities 6. Self-help organisations. These are possible means of help but should not be promised as solutions to all problems as they may not be successful for some relatives, who may be unwilling to return to the nurse for further advice if they have been disappointed at the first try. The nurse should always remember his/her limitations and seek advice throughout the con-

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Fig. 3 Genealogical identification chart. Family Tree 0

0

Man

fl

Woman

l Died

[x1

M

Married

040

Separated

m

Divorced

0-a

Cohabiting

D-a

Homosexual relationship 2nd

3rd

m

O//l/

@Patient

2nd & 3rd marriages

0

Friend

Example

q John

Elsie

Age (3)

0

Jane II/I/I////////III

0

0 Jim

Simon----aTom

Ann (6)

tact with the relatives

from a senior nurse who is responsible for overseeing the service and supporting the staff. Nurses should never offer to make home visits as it is not the intention to turn the staff into bereavement counsellors and add additional stress to their job. Following the telephone call the nurse should record relevant outcome on the any bereavement card, which should be then filed in a separate indexed file box to be available for future reference if necessary. It is the purpose of the follow-up service to try and help surviving relatives of people who died in the ITU with their grieving process and with practical advice where necessary. However, with the finite resources available, it is always necessary’ to remember our limitations, and there should be careful supervision of the service to prevent an overload on the staff. The nursing

Mary

(12)

(15)

staff ought not to be placed under pressure to take on such work and should be given the option to opt out of the service.

References Brett C, Dracup K 1978 Helping spouses of the critically ill patient. American Journal of Nursing 78 (I): 5 l-53 Cameron J, Parkes C M 1983 Terminal care; evaluation of effects on surviving family of care before and after bereavement. Postgraduate Medical Journal 59: 73-78 Collins S 1989 Sudden death counselling protocol. Dimensions of Critical Care Nursing 8 (6): 375-383 Hampe S 0 1975 Needs of the grieving spouse in the hospital setting. Nursing Research 24 (2): 113-l 19 Kubler-Ross E 1969 On death and dying. , ., Macmillan, New York Laurent C 1991 Finding the right person for the job. Nursing Times 87 (12): 27-30 McGuine& S 1986 Death rites. Nursing Times 19: 28-31

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Parkes C M 1972 Bereavement studies of grief in adult life. Tavistock, London Worden J W 1983 Grief counselling and grief therapy. Tavistock, London Wright B 1991 Sudden death. Intervention skills for the caring professions. Churchill Livingstone, Edinburgh You11J W 1989 The bridge beyond. Intensive Care

Nursing 5 (2): 88-94

Foundation for the Study of Infant Deaths For parents of a baby who has died suddenly unexpectedly. 15 Belgrave Square, London SW 1X 8PS Tel: 071-235-172110965

APPENDIX Help groups Age Concern A national organisation for the elderly. Bernard Sunley House, 60 Pitcairn Road, Mitcham, Surrey CR4 3LL Tel: 08 l-649-543 1 Bereaved parents’ helpline An organisation that gives support to bereaved parents. 6 Canon Gate, Harrow, Essex CM20 IQE Tel: 0279-4 12745 Bliss (Baby Life Support Systems) National network of support groups parents of babies in intensive care. 298 Woodlands Avenue, Eastcote, Middlesex HA4 9QZ Tel: 0895-8687593

Family Welfare Association Offers a professional casework and counselling services for families in distress. 50 l/505 Kingsland Road, London Tel: 071-254-6251

to help Ruislip,

Body (British Organ Donor Society) A self help and support group for families of organ donors and for those who have received organs. BODY, Balsham, Cambridge CB 1 6DL Tel: 0223-893-636 Cruse A national organisation to help any bereaved person. Cruse House, 126 Sheen Road, Richmond, Surrey TW9 1UR Tel: Middlesbrough (92)-2 10284

and

Foundation for Black Bereaved Families Offers help and support for bereaved black people of Afro-Caribbean origin. 11 Kingston Hill, Salters Hill, London SE19 IDZ Tel: 081-761-7228

Gay Bereavement Project A telephone service for bereaved homosexuals. Gay Switchboard. Tel: 07 l-837-7324

Jewish Bereavement Counselling Service Operates in greater London but can refer to other projects and individuals in other parts of the country. 1 Cyprus Gardens, London N3 1SP Tel: 08 I-349-0839

National Association of Widows 1st Floor, Neville House, 14 Waterloo Birmingham B2 5TX Tel: 02 l-643-8348

Samaritans Tel: Darlington

0325-465465

Street,