Chapter 10 - Care of the Dying

10.1 Introduction

At the time of appointment as a beneficiary of an almshouse charity a resident or residents, and any family members acting in support, will require comprehensive information regarding the services which he, she or they might expect to receive. Included in this information should be the support that might be expected if a resident becomes terminally ill or mentally incapacitated. It is important that residents are made aware of any limitation or restrictions imposed by the nature of almshouse accommodation (as distinct from residential or nursing care).

From time to time residents in the almshouses will experience deterioration in their physical and, possibly, in their mental state. They may also be diagnosed as terminally ill due to specific disease or ‘multisystem failure’ from extreme old age.

If a resident is diagnosed as such, it is crucial that the resident is given every opportunity to discuss the condition and to direct his or her care. Just as important is to establish the resident’s wishes regarding who, if anyone, in the family or close friends is to be informed and involved in the planning and delivery of the care.

At the time of appointment as a beneficiary of the charity or at the first stage of deterioration it is important that the charity has documented information concerning the resident’s wishes at the time of death, including details of the location of a will (if one exists).

10.2 The Making of a Will

There are many sources of help to assist people wishing to make a will.  Residents who enter the almshouses without a will should be encouraged to make one.  Home-made wills should be avoided. The cost of having a will drawn up by a solicitor is worthwhile.  A solicitor can be asked in advance what this will cost. The almshouse charity should be informed as to where the latest will is held.

The assets and belongings, ‘the estate’, of anyone who dies without having a will, i.e. ‘intestate’, are distributed in accordance with the laws of intestacy and only the spouse or specific blood relatives will benefit. If the intestate resident dies without any blood relatives the law of intestacy provides that the estate passes to the Crown and contact has to be made with the Treasury Solicitor (see Appendix B).

If a resident decides to change a will they can either revoke (cancel) the previous will and make a new one or add a codicil to the original will.  If a will is revoked it should be destroyed and the new will should state that it revokes all previous wills.

10.3 Living with a Diagnosis of a Potentially Life Limiting Illness

Many residents with a serious illness will prefer to continue to live in their almshouse for as long as possible. Supportive care from specialist nurses, e.g. Macmillan nurses, in co-operation with the primary health team may help to achieve this goal.

Some people will continue to live for a long time after diagnosis. Treatments for illnesses such as cancer may result in problems, for example, altered appearance, fear of recurrence, colostomy, tracheostomy, lymphoedema. There may be long periods of stability during remission of an inevitably progressive illness.

Sometimes the disease will progress after active treatment, or active treatment may not be possible. Prognosis may be short or long and it is important that people are offered support and palliation of symptoms and suffering as they approach death.

10.4 Hospice and Palliative Care Services

It should be the aim of all those who work together for the individual who is dying to improve the quality of life. Palliative care in its holistic approach and creative philosophy, pioneered by the hospice movement, aims at:

  • Giving effective symptom relief
  • Treating concurrent disease (e.g. secondary infections and depression)
  • Improving quality of life
  • Helping the patient's emotional, social and spiritual needs
  • Supporting the family emotionally and practically
  • Giving bereavement support after death.

It should be emphasised that palliative care is not synonymous with care of the dying. The aim is to help people live comfortably at home whenever possible.

Access to palliative care is usually arranged through the GP or the district nurse. A hospital consultant may make a referral. Referrals can be made at any time during the resident’s illness, not only when they are close to death or in difficulty. Palliative care teams are able to work in co-operation with specialist cancer services during active treatment of disease. Hospice and palliative care is free of charge to patients and families. Funding is provided mainly by independent charities with some from the NHS. Contacts for local hospices can be obtained from the Hospice Information Service at St Christopher’s (see Appendix B).

Although the service continues to be mainly for people with cancer, palliative care teams offer help to people suffering a wider range of illnesses and advise on difficult symptom-management problems. The care can be provided in various settings: at home, in hospital, at a day care facility or in a hospice. Admission for terminal care in the final stages of the illness can be offered, although hospices are unlikely to be able to provide long term care if the illness is stable. If the patient is symptom-controlled and has a long prognosis and yet feels unable to manage at home, then it may be necessary to consider a place in a nursing home.

10.5 Policy and Procedure in Care of the Dying

The individual policy for an almshouse charity will depend on the provision of services on site and how much support can be provided. Where a resident is diagnosed as being terminally ill, a programme of palliative care will be implemented, managed by any care staff on site and by other health care professionals. Where appropriate, next of kin should be involved in the planning and carrying out of care. A decision will be needed about the appropriateness of offering palliative care within the resident’s home, in consultation with the resident’s GP and the community nursing team.

The resident should be offered appropriate emotional and spiritual support to adapt to this stage of their life as well as being made as comfortable as possible, with due dignity and requests for care being observed. The key objectives are to promote the comfort of the resident and relieve pain, whilst assisting the resident to attain peace of mind in preparing for death. Consultation with the GP or community nursing team should continue between the resident, staff and next of kin throughout the period.

Both the resident and the next of kin should be offered the services of an
appropriate minister of religion. Remember that these services may also be helpful to staff involved.

Where the resident’s condition deteriorates and the next of kin is not present, the trustees or staff should make every effort to locate them and give the opportunity to attend. At the point of death any procedure agreed beforehand with the resident and key persons should be followed.

10.6 Spiritual Care 

It is important to distinguish the difference between spiritual, religious and cultural needs. They are related but often distinct in their definition and expression. In multi-cultural society people will belong to many faith and cultural traditions and will express themselves through a variety of hopes, needs and fears. There will be no substitute for knowing each individual resident and their needs.

Older people share the same basic spiritual needs as all human beings. These expressions of spiritual need have been summarised in the following ways: to receive and give love; to have faith in something or someone; to hope, in this life and beyond; to find peace; to worship that which is worthy of adoration and to find continuing meaning and purpose in life. Clearly any community cannot fully meet all these needs but an awareness of them and sensitivity towards them can enhance a resident’s embracing of their diminishment and mortality.

10.7 Death of a Resident

10.7.1 Notifying and Registering the Death (See Appendix G)
Whether the resident dies suddenly or following a period of palliative care, the GP has to be informed immediately. If the resident is found dead, the body should not be moved until the GP arrives. The doctor will certify the death and provide the appropriate death certificate and, where specified, a cremation form. If there is any doubt about the cause of death, the doctor may summon the Coroner’s Officer to investigate before issuing a death certificate. If it is not possible for the certificate to be issued immediately, the next of kin will need to collect the certificate from the surgery.

If the charity is registered for nursing or residential care, the Registration Authority needs to be informed of the death, including time, date and cause of death and any referral to the Coroner. Where it has not been possible for the next of kin to be with the resident at the time of death, they must be informed as soon as possible.

The death has to be registered with the local Registrar within five days. It is most important that the charity holds relevant information regarding the location of the Registrar and the procedure for registering the death to assist the next of kin. The charity may also have its own internal procedures with regard to making contact with the Chairman of Trustees, the clerk or a member of the clergy, or recording the event in the day book or diary.

10.7.2 Arrangements for Removal of Body and Funeral
The next of kin may wish to see the deceased, either alone or accompanied.

Where the resident’s wishes regarding their funeral are not already known, the next of kin should be consulted.

The clerk or administrator of the almshouse charity should hold information regarding appropriate local religious/spiritual services and funeral directors in case the next of kin does not have a favoured option or needs advice.

10.7.3 Personal Property
Once the resident has died their almshouse should remain locked until the executor can make arrangements to remove the contents. Any money or jewellery on the deceased person should be noted. If valuables are removed this should be carefully recorded, preferably in the presence of a second person. The responsibility for administering an estate rests with the executor and the clerk or administrator need to be sure that they are dealing with the properly appointed person.

If the deceased resident left no will then the charity should deal with the closest relative who is going to have legal responsibility for administering the estate under the laws of intestacy.

10.7.4 Advising Staff and Other Residents
Trustees should agree a policy and a form of words to notify staff and volunteers, as well as other residents, when a resident dies.  This must be done with tact and consideration.  Bereavement counselling may be recommended from local Cruse Bereavement Care support groups – see Appendix B.

10.7.5 Pensions, Benefits, Minimum Income Guarantee, SP Grant etc.
Any information held by the charity in relation to these matters should be passed over to the executor/administrator to assist them in winding up the deceased’s affairs. The charity will find it useful to note the details of the executors or family members involved should there be any matters that arise after the funeral.

For Further Information:

Cruse Bereavement Care – www.crusebereavementcare.org.uk
Hospice Information Service at St Christopher’s: www.stchristophers.org.uk
Macmillan Nurses: www.macmillan.org.uk
Treasury Solicitor’s Department: www.tsol.gov.uk
www.hospiceinformation.co.uk


© 2013. This document is copyright of the Almshouse Association and no part of it may be produced or published without the Association’s written consent.


 


10.0 Care of the Dying


10.1 Introduction

At the time of appointment as a beneficiary of an almshouse charity a resident or residents, and any family members acting in support, will require comprehensive information regarding the services which he, she or they might expect to receive. Included in this information should be the support that might be expected if a resident becomes terminally ill or mentally incapacitated. It is important that residents are made aware of any limitation or restrictions imposed by the nature of almshouse accommodation (as distinct from residential or nursing care).

From time to time residents in the almshouses will experience deterioration in their physical and, possibly, in their mental state. They may also be diagnosed as terminally ill due to specific disease or ‘multisystem failure’ from extreme old age.

If a resident is diagnosed as such, it is crucial that the resident is given every opportunity to discuss the condition and to direct his or her care. Just as important is to establish the resident’s wishes regarding who, if anyone, in the family or close friends is to be informed and involved in the planning and delivery of the care.

At the time of appointment as a beneficiary of the charity or at the first stage of deterioration it is important that the charity has documented information concerning the resident’s wishes at the time of death, including details of the location of a will (if one exists).


10.2  The Making of a Will

There are many sources of help to assist people wishing to make a will.  Residents who enter the almshouses without a will should be encouraged to make one.  Home-made wills should be avoided. The cost of having a will drawn up by a solicitor is worthwhile.  A solicitor can be asked in advance what this will cost. The almshouse charity should be informed as to where the latest will is held.

The assets and belongings, ‘the estate’, of anyone who dies without having a will, i.e. ‘intestate’, are distributed in accordance with the laws of intestacy and only the spouse or specific blood relatives will benefit. If the intestate resident dies without any blood relatives the law of intestacy provides that the estate passes to the Crown and contact has to be made with the Treasury Solicitor (see Appendix B).

If a resident decides to change a will they can either revoke (cancel) the previous will and make a new one or add a codicil to the original will.  If a will is revoked it should be destroyed and the new will should state that it revokes all previous wills.


10.3  Living with a Diagnosis of a Potentially Life Limiting Illness

Many residents with a serious illness will prefer to continue to live in their almshouse for as long as possible. Supportive care from specialist nurses, e.g. Macmillan nurses, in co-operation with the primary health team may help to achieve this goal.

Some people will continue to live for a long time after diagnosis. Treatments for illnesses such as cancer may result in problems, for example, altered appearance, fear of recurrence, colostomy, tracheostomy, lymphoedema. There may be long periods of stability during remission of an inevitably progressive illness.

Sometimes the disease will progress after active treatment, or active treatment may not be possible. Prognosis may be short or long and it is important that people are offered support and palliation of symptoms and suffering as they approach death.


10.4  Hospice and Palliative Care Services

It should be the aim of all those who work together for the individual who is dying to improve the quality of life. Palliative care in its holistic approach and creative philosophy, pioneered by the hospice movement, aims at:

  • Giving effective symptom relief
  • Treating concurrent disease (e.g. secondary infections and depression)
  • Improving quality of life
  • Helping the patient's emotional, social and spiritual needs
  • Supporting the family emotionally and practically
  • Giving bereavement support after death.

It should be emphasised that palliative care is not synonymous with care of the dying. The aim is to help people live comfortably at home whenever possible.

Access to palliative care is usually arranged through the GP or the district nurse. A hospital consultant may make a referral. Referrals can be made at any time during the resident’s illness, not only when they are close to death or in difficulty. Palliative care teams are able to work in co-operation with specialist cancer services during active treatment of disease. Hospice and palliative care is free of charge to patients and families. Funding is provided mainly by independent charities with some from the NHS. Contacts for local hospices can be obtained from the Hospice Information Service at St Christopher’s (see Appendix B).

Although the service continues to be mainly for people with cancer, palliative care teams offer help to people suffering a wider range of illnesses and advise on difficult symptom-management problems. The care can be provided in various settings: at home, in hospital, at a day care facility or in a hospice. Admission for terminal care in the final stages of the illness can be offered, although hospices are unlikely to be able to provide long term care if the illness is stable. If the patient is symptom-controlled and has a long prognosis and yet feels unable to manage at home, then it may be necessary to consider a place in a nursing home.


10.5 Policy and Procedure in Care of the Dying

The individual policy for an almshouse charity will depend on the provision of services on site and how much support can be provided. Where a resident is diagnosed as being terminally ill, a programme of palliative care will be implemented, managed by any care staff on site and by other health care professionals. Where appropriate, next of kin should be involved in the planning and carrying out of care. A decision will be needed about the appropriateness of offering palliative care within the resident’s home, in consultation with the resident’s GP and the community nursing team.

The resident should be offered appropriate emotional and spiritual support to adapt to this stage of their life as well as being made as comfortable as possible, with due dignity and requests for care being observed. The key objectives are to promote the comfort of the resident and relieve pain, whilst assisting the resident to attain peace of mind in preparing for death. Consultation with the GP or community nursing team should continue between the resident, staff and next of kin throughout the period.

Both the resident and the next of kin should be offered the services of an appropriate minister of religion. Remember that these services may also be helpful to staff involved.

Where the resident’s condition deteriorates and the next of kin is not present, the trustees or staff should make every effort to locate them and give the opportunity to attend. At the point of death any procedure agreed beforehand with the resident and key persons should be followed.


10.6 Spiritual Care

It is important to distinguish the difference between spiritual, religious and cultural needs. They are related but often distinct in their definition and expression. In multi-cultural society people will belong to many faith and cultural traditions and will express themselves through a variety of hopes, needs and fears. There will be no substitute for knowing each individual resident and their needs.

Older people share the same basic spiritual needs as all human beings. These expressions of spiritual need have been summarised in the following ways: to receive and give love; to have faith in something or someone; to hope, in this life and beyond; to find peace; to worship that which is worthy of adoration and to find continuing meaning and purpose in life. Clearly any community cannot fully meet all these needs but an awareness of them and sensitivity towards them can enhance a resident’s embracing of their diminishment and mortality.


10.7 Death of a Resident

10.7.1  Notifying and Registering the Death (See Appendix G)

Whether the resident dies suddenly or following a period of palliative care, the GP has to be informed immediately. If the resident is found dead, the body should not be moved until the GP arrives. The doctor will certify the death and provide the appropriate death certificate and, where specified, a cremation form. If there is any doubt about the cause of death, the doctor may summon the Coroner’s Officer to investigate before issuing a death certificate. If it is not possible for the certificate to be issued immediately, the next of kin will need to collect the certificate from the surgery.

If the charity is registered for nursing or residential care, the Registration Authority needs to be informed of the death, including time, date and cause of death and any referral to the Coroner. Where it has not been possible for the next of kin to be with the resident at the time of death, they must be informed as soon as possible.

The death has to be registered with the local Registrar within five days. It is most important that the charity holds relevant information regarding the location of the Registrar and the procedure for registering the death to assist the next of kin. The charity may also have its own internal procedures with regard to making contact with the Chairman of Trustees, the clerk or a member of the clergy, or recording the event in the day book or diary.

10.7.2 Arrangements for Removal of Body and Funeral

The next of kin may wish to see the deceased, either alone or accompanied.

Where the resident’s wishes regarding their funeral are not already known, the next of kin should be consulted.

The clerk or administrator of the almshouse charity should hold information regarding appropriate local religious/spiritual services and funeral directors in case the next of kin does not have a favoured option or needs advice.

10.7.3 Personal Property

Once the resident has died their almshouse should remain locked until the executor can make arrangements to remove the contents. Any money or jewellery on the deceased person should be noted. If valuables are removed this should be carefully recorded, preferably in the presence of a second person. The responsibility for administering an estate rests with the executor and the clerk or administrator need to be sure that they are dealing with the properly appointed person.

If the deceased resident left no will then the charity should deal with the closest relative who is going to have legal responsibility for administering the estate under the laws of intestacy.

10.7.4  Advising Staff and Other Residents

Trustees should agree a policy and a form of words to notify staff and volunteers, as well as other residents, when a resident dies.  This must be done with tact and consideration.  Bereavement counselling may be recommended from local Cruse Bereavement Care support groups – see Appendix B.

10.7.5 Pensions, Benefits, Minimum Income Guarantee, SP Grant etc.

Any information held by the charity in relation to these matters should be passed over to the executor/administrator to assist them in winding up the deceased’s affairs. The charity will find it useful to note the details of the executors or family members involved should there be any matters that arise after the funeral.

For Further Information:

Cruse Bereavement Care – www.crusebereavementcare.org.uk

Hospice Information Service at St Christopher’s: www.stchristophers.org.uk

Macmillan Nurses: www.macmillan.org.uk

Treasury Solicitor’s Department:  www.tsol.gov.uk