Dying at Home

Why do so many people who wish to die at home die in other care settings?

Dying at home is associated with:

Having a carer
Stating a preference for dying at home
Being aware of the prognosis and having realistic coping strategies
Having adequate practical community support
Having special equipment.

The commonest reasons for an unwanted admission are related to:

Physical deterioration, especially loss of mobility and/or confusion
Carer fatigue and stress.

Surprisingly pain and symptom control are not a major cause of a terminal admission. The big gap appears to be access to enough practical home help. This is likely to become more of a problem as the population ages, family size decreases and single-person households increase.

The physical and emotional demands of caring for a loved one who is dying 24 hours a day cannot be overestimated. Despite this, most carers report it a satisfying or rewarding experience. Carer satisfaction is generally much higher than after death in an acute hospital. In a number of areas, primary care nurses and doctors are involved with stimulating the development of additional practical home care services for this group of patients.

If patient and family wish the death to be at home, the practicality of this needs to be addressed:

If a home birth was being prepared for, there would be detailed, proactive planning. Generally this would include attention to:

The care environment
The lay carers
The professional carers
The safety net in case of problems
Anticipating and planning for common problems
Rapid, easy access to medication (including out of hours)
Rapid, easy access to necessary equipment (including out of hours)
Rapid, easy access to medical and nursing staff (including out of hours)
Information and support for patient and carers.

The same careful, detailed approach and proactive planning can transform a death at home into a positive and immensely rewarding service for the primary care team to offer.

1. The care environment

Nursing a bedbound patient generally presents fewer challenges than nursing a very weak patient who is still struggling to transfer to the toilet, commode or chair. The choice of room will generally be what works best for family and nursing staff.

Advantages

Disadvantages

Upstairs

Familiar bed/bedroom

Usually easy to sleep with partner (double bed)

Bathroom usually upstairs

Quiet.

May be distressing for partner after death

Difficult if hospital bed/airwave mattress required. May sleep better alone

Carer needs to come up and down stairs frequently.

Downstairs

Less isolated

Often more space for bed/mattress/equipment

Easier to monitor by day for partner

More a part of everyday activity.

Less privacy

Unfamiliar sleeping environment

Needs a trustworthy call system at night if carer sleeping upstairs

May be noisy. Difficult to separate from visitors.

Table: Choice of room for care of the dying.

Check there is access to:

A telephone (or mobile phone)
Facilities for personal care
An intercom, baby monitor or handbell for attracting attention.

2. The carers

Nursing a loved one through the last days of their life can be a great gift or a terrible burden. Assess the carer(s). Do they:

Feel able to do it and
Have adequate physical strength
Have adequate emotional resource
Have access to practical help. This may be a rota of carers from within the family network or may need supplementing by district nurses, home carers, Marie Curie nurses, Hospice at Home nurses or other support schemes.
Know what help is available and how to access it.

It is best if this is checked out of the patients hearing, so the carer can speak honestly if he/she has doubts or concerns.

3. The professional support

Caring for a patient dying at home is demanding of medical and nursing time and the multi-professional team need to discuss the situation, the care environment and the carer support available and how much input they can give. The commonest reason for admission at this stage is not a lack of expert knowledge, but a lack of hands-on nursing help.

Potenial sources of professional help:

District nursing services
Marie Curie nursing services can provide one to one shifts of nursing care in the home. May be limited to some nights each week depending on local resource. May also be limited to cancer patients only
Macmillan carer schemes can put "sitters" into the home for varying periods to allow main carer respite
Hospice at Home schemes vary considerably from advice/support visits from trained palliative care nurses to schemes able to provide full shifts of palliative nursing care in the home. Skill range varies. Freestanding services or linked to inpatient Hospices. Some offer medical advice/support
Specialist palliative care community nurse (Macmillan nurse). Does not usually provide hands-on nursing input, but an important resource for the primary care team, patient and family in providing expert advice and emotional support. Usually very knowledgable about local resources and networks

"I cared for him at home, I knew it was what he would want. He was virtually hospital-phobic; he did not like the place at all. He almost never went to a doctor so there was no way I was going to put him into the care of a hospital and know that he wasn't comfortable with it. Besides, it just seemed the normal, natural thing to do, to nurse him at home with his family round him. We had two downstairs rooms, fortunately, so we just moved his bed downstairs and it was OK. I think it was the last 10 days that he wasn't able to walk any more. It wasn't easy, but the bathroom is downstairs so he only had to cross the hall to use the loo. They did say they would send nurses in the night if I wanted them and gave the number of the out-of-hours doctor. Between them, that's how we managed until the end."
Women caring for husband dying of lung cancer at home.

Safety nets

The physical and emotional strain can quickly become overwhelming and it is vital that good safety nets are built into the care package. These may range from an agreement that the family will accept more nursing support to a backup bed being available nearby. In practice, this is rarely needed. However, the family need to know that if the patient needs admitting when they are very near death, there is a chance they may die in the ambulance. Conversely, they also need to know that an admission in the last week or two of life may mean the patient becoming too ill to transfer home to die, even if this is their preference.

Anticipating and planning for common problems at home

Many problems in the last days of life can be predicted and prepared for:

Anticipated Problem	Consider & Plan
Loss of mobility. Unable to transfer safely	Generally safer and more manageable to nurse in bed Consider loan of hospital bed/monkey pole/cot sides/commode/ urine bottles Assess for pressure area care and implement appropriate strategy Indwelling urinary catheter/sheath for men is more acceptable if incontinent/unable to transfer to commode Bowel care
Loss of ability to eat	Prepare family and patient for this happening Explain it is a natural process Forcing food may create discomfort if too weak to swallow/digest
Loss of ability to drink	Prepare family and patient for this happening Explain it is a natural process and may aid comfort by reducing secretions/gastric secretions and chance of vomiting/urine output Encourage sips/mouth care If still distressed by thirst consider S/C fluids (N.saline 1 litre over 12 hour via a butterfly into anterior abdominal wall or thigh)*
Loss of ability to shallow	Convert essential medications to subcutaneous route (if no syringe driver available see table 2 for alternative strategies)
Delirium and agitation	Common at the end of life Distressing and frightening for everyone involved (See p) Haloperidol 5-30mg/24h SC and/or midazolam 5-60mg/24h SC (if agitation only)
Pain	Morphine or Diamorphine SC prn in proportion to overall opioid requirement (can be administered sublingually if injection not appropriate) Leave pre drawn-up syringes: leave an indwelling butterfly needle SC
Vomiting	Cyclizine 50mg tds SC or Buccastem 3mg sublingual or Transdermal hyoscine
Dyspnoea	Common and frightening Morphine or Diamorphine preferably SC (or sublingual) titrated up as for pain Midazolam 2-10mg SC or sublingual prn or 5-30mg SC/24h for breathlessness/fear or Diazepam
Excess respiratory secretions	Positioning/portable suction (if available) Hyoscine 0.4mg sublingual or SC 4h prn or Hyoscine 1.6-2.4mg/24h SC Hyoscine transdermal patch
Changing breathing pattern	Explanation to family "He may appear to stop breathing for a time, then draw another breath"

Table: Anticipating and preparing for problems at home.
Adapted from "Guidelines on managing predictable problems in home death" with permission from Dr. Mike Harlos, Manitoba, Canada.

*N. saline, 4% dextrose/0.18% saline or 5% dextrose are all suitable. No more than 2 litres/24 hours should be infused into any one site. Fluid should not be pumped in.

Our knowledge of the likely problems allows us to anticipate and plan for appropriate medical and nursing interventions. Each day or each visit aim as you leave to anticipate what might happen over the next day or two. This includes:

Medication

Ensuring easy access to medication that is likely to be needed. Consider:

Keeping a "palliative care bag" in the practive containing syringe driver, needles, tubing and drugs most often used during the dying phase. A prescribing protocol could be put with it as an Aide-memoir. In the event of a sudden deterioration the bag is taken to the patients home
Leaving a box of injectable medication in the home a week or two before it is needed.
Leaving the syringe driver in the home before it is needed.
Working with community pharmacists to carry core drugs most often used during the dying phase. These can then be accessed quickly using the "urgent" prescription scheme (A standard NHS prescription form marked "URGENT" by the doctor).
Ensuring the "CORE FOUR" as rapidly available: diamorphine, cyclizine, hyoscine hydrobromide and midazolam.

CORE FOUR Indications in the last days of life	CORE FOUR drugs for the last days of life	Alternatives*
Pain or emergency	Rx Morphine injection: dose 5-10 mg or one sixth of current 24 hour morphine requirement	*Morphine conc. liquid (20mg/5ml) 5-10mg buccal
Nausea/Vomiting	Rx Cyclizine injection 50mg	Buccal prochlorperazine 3mg/rectal prochlorperazine 5mg
Excess secretions	Rx Hyoscine hydrobromide injection 0.4mg	Hyoscine transdermal patch 1mg/72hrs (may need 2-3)
Agitation/restlessness	Rx Midazolam injection 2.5-10mg	*Sublingual lorazepam 1mg/rectal diazepam 10mg

*Sublingual administration is not always easy for patients if the mouth is dry, co-ordination is poor and cognitive function is reduced. Rectal administration can be a challenge for carers both physically (turning and positioning the patient) and emotionally.

Other useful drugs are haloperidol and levomepromazine (see "A brief guide to drugs for the syringe driver").

Equipment

Ensuring easy access to equipment that is likely to be needed. This includes:

A hospital style bed/electronic bed
Pressure relieving mattresses
Commode
Catheterisation pack
Intercom
Nebuliser
Syringe driver.

Access and equipment sources vary. Find out where yours are before you need them. Voluntary Hospices, Hospice at Home services and community palliative care services may be interested in working with you to set up rapid access loan systems in your area.

Nursing Care

Discontinue non-vital nursing interventions. This usually includes:

Enemas/Suppositories
Checking of temperature, blood pressurs or other vital signs
Four hourly turning regimes

Areas of care to focus on are:

Nursing on a high dependancy mattress and turning for comfort only
Care of the eyes (regular instillation of artificial tears if open)
Care of the mouth (see Mouth Care in A-Z of symptom control)
Personal care to maintain dignity/comfort only
Continence needs (pads, catheter)
Monitoring symptom control/medication
Carer support

Carer support and basic information needs

Basic information on how to care for very ill patients and how to access help if needed is not given often enough.

Do the family understand the patient is dying?
Do they have any questions about this?
Do they understand the role and purpose of any medication?
Do the family have a written medication regime they can check with?
Do the family know what medication they can administer themselves and when to call for help?
Do they understand the reduced need for food and fluid?
Do the family know how to turn the patient, if they need moving between nursing visits?
Do the family know how to cope with basic care: washing, toilet needs, care of the mouth and eyes? How much of this do they wish to do themselves? How much nursing help do they need?
Is the care package appropriate and clear?
Do the family have written contact details for nursing and medical services, including any variations out of hours?
Do the family know who/when to contact if problems arise, or after the death?
Do you have written information available on what to do after a death, local death registration facilities and their opening hours and local bereavement support services?

Above: Information checklist for carers

Which drugs to continue in the last few days of life?

General Principles

1. Continue essential medication
This means:

regular adequate analgesia
anticonvulsants
benzodiazepines/phenothiazines

If your patients becomes unable to swallow:

morphine by mouth can be replaced by S/C morphine or diamorphine. Divide the oral morphine dose (mg) by by 2 to get the SC morphine dose, or by 3 to get the equivalent S/c diamorphine dose (mg).
anticonvulsants can be replaced by diazepam 10-20mg tds PR or midazolam 30mg/24hrs S/C.
benzodiazepines/phenothiazines can be given PR or parenterally.

2. Discontinue non-essential medication
This may mean:

steroids
NSAID's (increase morphine or use suppositories)
antibiotics
insulin/oral hypoglycaemics
antidepressants
bronchodilators
anti-hypertensive/anti-arrhythmics
diuretics
laxatives
iron and vitamin supplements

3. Anticipate problems

have something available for emergency administration, e.g. haemorrhage or fit. Diamorphine given Midazolam 10mg is suitable.
use Hyoscine Hydrobromide EARLY to prevent "death rattle". 0.4mg S/C 4 hourly is suitable.
if your patient is restless check:

bedclthes are loose
position is comfortable
bladder is empty
rectum is empty
pain control is adequate
does he/she have unfinished thing to say/do?
midazolam 30-60mg/24 hours S/C gives good sedation

Communication within the primary care team

Different professionals from different teams may be involved in care during the last few days of life. There may be different partners from the practice, different shifts of nurses, "out of hours" teams for both medical and nursing staff, "Hospice at Home" or Marie Curie nurses, Macmillan or other specialist community palliative care nurses, home carers, community occupational therapy input and so on. This can give excellent seamless care and support, or become a communication quagmire, with conflicting messages and unnecessary duplication (or omission) of key tasks.

Keep a basic communication sheet in the home. At the very least this needs to list medications and nursing care plan; ideally it should also carry information about the diagnosis, the information given to patient and family and what is known of the patients wishes.
Explore with your out of hours service access to out of hours palliative care drugs, syringe drivers and communication forms. This helps them, you and your patients.
Consider the use of an evidence-based care pathway such as the Liverpool integrated care pathway for the dying patient. This combines a structured assessment tool, holistic evidence-based care during dying and after death for patient and family with a multidisciplinary record. Using this tool provides outcomes of care in general settings which are as good as those achieved in a specialist hospice setting.

Spiritual and religious needs

Patients may have specific religious needs as death approaches. Generally, even if you think you are familiar with aspects of a particular religious practice, it is much better to ask than to assume.

A very general overview of the diversity of practice is given in the section on religious needs.

Spiritual need is universal. This is a time for medical and nursing care to be delivered with the utmost kindness, compassion and respect for the individual who is dying and the soon to be bereaved family.

Remember

Doctors worry about drugs and prescribing. For patients and their families this is the first and only time they will travel through this experience. They worry about practicalities of daily life: drug administration, fluids, food, washing, incontinence, vomiting, mouthcare, practical nursing support, whether they are doing "the right thing".

It cannot be stressed enough that family members may be frightened, exhausted, grief-filled and unfamiliar with the natural process of dying. Explain everything several times and ensure clarity about who to call and when; how to contact out-of hours medical and nursing services and the additional sources of help and advice in your area (Macmillan nurses, local Hospice advice lines, Hospice at Home services, Marie Curie services) Gently clarify the procedure for after the death who to phone and when is often enough at this stage. Written information can be an important back-up. Carers will not always recall the detail of what they have been told.

Key Points

Different patients will have different ideas of what constitutes a good death.
The diagnosis of dying is difficult but there are clear clinical situations that indicate the last 2 weeks or last few days of life.
Performance status (how much the patient can do) is the most consistent predictor of prognosis.
Goals of care in the dying phase become more general and emphasise physical comfort, peace, dignity, spiritual care and care of the family.
Most people would prefer to die at home but most die in hospital.
Hospital admission is more often linked to care breakdown than the need for specialist help in symptom control.
Preparation, anticipation and multi-disciplinary working are the keys to good care at home.
Ensure rapid access to the "CORE FOUR" drugs: Morphine or diamorphine, cyclizine, hyoscine hydrobromide and midazolam.
Ensure good information sharing between carers, family and professionals.

Dying at Home - a practical toolkit (Powerpoint Presentation)

Bibliography

Chritakis N.A. Lamont E.B. Extent and determinants of error in doctors prognoses in terminally ill patients: prospective cohort study BMJ (2000) 320:469-73
Higginson IJ, Astin P, Dolan S Where do cancer patients die? Palliat Med 1998 12 353-363
Karlsen S, Addington Hall J How do cancer patients who die at home differ from those who die elsewhere? Palliat Med 1998 12 279-286
Hinton J Services given and help perceived during home care for terminal cancer Palliat Med 1996 125-134
Brockbank J What relevance do community hospital beds have for palliative care patients? European J Palliat Care 2002 9 164-166
Ellershaw J et al Development of a multiprofessional care pathway for the dying patient European J Palliat Care 1997 4 203-208
Ellershaw J, Ward C Care of the dying patient: the last hours or days of life BMJ 2002 326 30-34
Thomas K Out of hours palliative care-bridging the gap European Journal of Palliative Care 2000 7 22-25

© Dr. Eileen Palmer, Dr John Howarth Palliative Care for the Primary Health Care Team Quay Books ISBN 1856422291
Updated February 2011