The D-Word

 Medical Matters

Towards the End

Home-Care

Some statistics

Around 500,000 people die in England each year.Two-thirds are aged 75 and over.

Where we die

18% Home       58% Hospital

4%  Hospice    17% Care Homes
3%  Elsewhere

Towards the End

Generally speaking those who are dying from a terminal or chronic illness will spend most of their final year of life at home, even though many may spend periods of time in hospital or in a hospice.

During these final months, most are cared for by relatives, friends and even neighbours, supported by healthcare professionals working within the community.

Those with cancer are usually supported by Macmillan Nurses, arranged through the GP, who will come to the patient’s home, and liaise with the local hospice.The role of a hospice is to find ways of stabilising patients so they can return home again, before they may need to be readmitted for final end-of-life care. When cancer patients chose to die at home, the hospice team do what they can to provide appropriate home-care.

Those at home suffering from chronic illness or who are becoming increasingly elderly usually rely on relatives, friends and neighbours plus support from their GP, District and Community nurses.

Home-Care

Private nursing care is available at a cost. Home-nursing can also be obtained through care agencies funded by the NHS. But the availability of these care agencies does vary from region to region.You would need to talk to your GP about different home-care options, and who to contact. 
 
GPs can't ethically recommend any one home, though they will discuss options - it's usually social services who decide on the level of care required.
 
However, these groups of patients are more likely to be admitted into hospital or into nursing homes as their health deteriorates, or when they, or their carers, can no longer cope.

Care Homes

Care homes are very different from hospices. They provide long-term care mainly for elderly residents and are either funded through the NHS or privately owned by individuals, company groups, or by large health-care organisations such as BUPA.

Care homes are regulated by the Commission for Social Care Inspection  (CSCI), which is responsible for monitoring the standards of most private, voluntary and local council care services.

CSCI inspects all registered care homes to make sure they meet National Minimum Standards, which are set by the Department of Health. The CSCI only registers care homes if they meet these standards. There is more on the DirectGov website: www.direct.gov.uk

There are more than 21,500 registered care home, residential homes and nursing homes in the UK. However, because they are run as viable businesses, the quality of care can vary. It’s important to talk through any choices and decisions with your GP and/or your family. Care homes can be expensive. So considerable planning and thought may need to be put towards ways of meeting on-going fees. Sometimes, after a financial assessment, local councils can contribute towards costs.

Most care homes are staffed by qualified nurses and nursing assistants and auxiliaries, led by a matron. Support staff may not always have English as their first language. The majority of care homes follow the Government’s end-of-life care strategy, and assess the individual needs of every resident when they first arrive. 
 
It is worth finding out as best you can before comitting yourself (or a relative) how confident any residential home is with end of life care. Many are very good if properly supported by the commmunity nursing staff.

Hospices

In 1967 Dame Cicely Saunders, at St. Christopher's Hospice in London, started the hospice movement to care for dying patients.

Some hospices receive funding from government or the NHS. However the majority hold charitable status, and rely heavily on local support and community fund-raising events. Many auxiliary hospice workers are volunteers.

The hospice philosophy centred around the right of a terminally-ill person to spend as much time as they can at home. Hospice care provides medical, social, emotional, and spiritual to support their patients.

The majority of hospice patients have cancer,although others may have chronic illnesses such as HIV/AIDS and heart and lung disease. Patients can be any age, race or hold different religious or spiritual beliefs.

Hospice nurses are usually qualified nurses who have chosen to work in hospice care. These nurses carry out traditional nursing care duties such as recording symptoms, administering medication, and working closely with doctors in order to minimize physical pain and discomfort and to make the last few weeks and days for patients as comfortable as possible.

An equally important area is to provide emotional support to those in their care, with the knowledge that they are dying. Therefore hospice nurses often spend time providing home-care, talking to relatives or liaising between families and medical professionals. They may also work alongside social workers, and other carers.
 
Most hospices have a day centre facility which helps them build up a rapport with patients in the early stage of their illness (and give carers a break)

Terminology

Palliative care: providing care to help relieve or sooth the symptoms of a disease or disorder without effecting a cure.

Terminal illness: an active or malignant disease which cannot be cured. It is

 best defined as a life expectancy of 6 months or less, whether involving a malignancy or not. At this point the GP can sign a 'DS 1500' form for expiditing care benefits for the patient. The GP, district nurse or cancer care nurse will usually make sure this is done in good time.

Chronic illness: a persistent or reoccurring illness which often results in disability and may foreshorten life expectancy.

A Prognosis: the length of time a patient may have left to live. Sometimes referred to as a '5-year survival rate', i.e., the statistical chance of the patient dying in the next five years (of anything). None will have a 100% survival expectancy. Life has its dangers. But, for instance, the chance of a fit, non-smoking 50-something male having a stroke or developing cardiovascular disease in the next 10 years is about 5%.

Living Wills and Liverpool Care Pathway

An Advanced Decision in the UK (Advanced Directive in Scotland  otherwise called an Advanced Care Plan): Legal document which stipulates,for example, whether you want to be resuscitated, or should you become seriously ill, what life-prolonging treatment you might wish for, or who you would like to be informed.

It must be signed and dated whilst you are mentally capable. Hospices and Care Homes usually instigate an Advanced Care Plan when a patient or resident is first admitted. Or you can download your own Living Will. If so, it is advisable to give a copy to your GP or your solicitor, as well as to any next-of-kin who need to know your wishes.

Liverpool Care Pathway for End-of-Life Care: Particularly within the NHS and most hospices, dying patients are usually placed on the Liverpool Care Pathway, or the equivalent, by medical staff in the last few weeks or days of life to ensure the delivery of appropriate physical, psychological and spiritual end-of-life care.

Medical Roles

Oncologist: A doctor who specialises in diagnosis and treatment of cancer. Most NHS hospitals have an Oncology unit, and a team of oncology nurses. 

Palliative Care Consultant: A doctor who leads a specialist team in the provision and management of all patients with chronic and terminal illness. They are employed by the NHS and also work in hospices.

Macmillan Nurses and Palliative Care Clinical Nurse Specialists: Macmillan Nurses are clinical nurse specialists in cancer and palliative care who are employed in a post that has been funded by Macmillan Cancer Relief initially and then by the NHS. They work in hospitals and in the community, but not usually within the private health care scheme. To obtain the services of a Macmillan nurse or Palliative Care Clinical Nurse Specialist, you must be referred by your GP, your hospital consultant, a district nurse or a hospital ward sister.

Marie Curie Nurses: These are specially trained cancer or palliative care nurses, funded by the Marie Curie Cancer Care Charity. Their services are free to patients, and their families, who are cared for by Marie Curie Hospices found throughout the UK.

What Happens in an Emergency

Dr Adrian Clarke, GP

In the interests of demystifying death, here are the current recommendations used by the Dorset Ambulance Service when certifying death (it is now legal for "any competent person" to confirm that death has occurred).

This is different from certifying the cause of death, of course, which is a strictly medico-legal procedure.

If the ambulance is called as an emergency to a dying or dead patient the crew must confirm ALL of the following to confirm occurrence of death (and be in a position to leave the body where it is found).

•    Patient collapsed more than 15 minutes prior to the arrival of ambulance
•    No evidence of bystander cardiopulmonary resuscitation
•    No pulse (measured over 30 seconds)
•    No respiratory effort (measured over 30 seconds)
•    Fixed and dilated pupils (not constricting when a bright light is shone into them)
•    Absent heart sounds (as heard by stethoscope)
•    30 seconds of ECG heart tracing showing no electrical activity

There are exceptions: if ANY of pregnancy, drowning, hypothermia or overdose are suspected, emergency resuscitation and removal to hospital must be attempted.

The duty to resuscitate as above can be overridden by a DNR (Do Not Resuscitate) order issued by a doctor or a Living Will made by the patient.

For a DNR order to be valid it must relate to the patient's current condition and have been made by a doctor (though it can be communicated to the ambulance crew by other health care staff).  (It would be quite unethical for the medical profession to enact a DNR order without consultation and agreement with the patient’s family).

For a Living Will to be valid it must relate to the patient's current condition and have been witnessed, preferably in writing. The patient must have been at least 18 years old and mentally competent when it was drawn up. It does not necessarily have to be with the patient at the time of the emergency.

If there is any significant doubt the ambulance crew will provide all clinical care, including removal of the patient to an accident and emergency unit