Copyright © Diane Gainey - http://www.diane-gainey.co.uk

"Wisdom begins in wonder."

SOCRATES

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:

The commonest reasons for an unwanted admission are related to:

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 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:

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:

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:

"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:

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:

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:

Areas of care to focus on are:

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.

Above: Information checklist for carers

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

General Principles

1. Continue essential medication
This means:

If your patients becomes unable to swallow:

2. Discontinue non-essential medication
This may mean:

3. Anticipate problems

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.

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

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

Important News

Important Changes in Cumbria Palliative Care Prescribing Practice

Cumbria is changing practice, from 1st April 2011.

The Area Prescribing Committee has recommended the following changes:

  • All strong opioids are to be prescribed by brand name
  • "Just in Case" prescribing is to be encouraged and promoted
  • Morphine is to replace diamorphine as the subcutaneous injectable strong opioid of choice for palliative care patients in Cumbria

21/03/2011

Read More

North Cumbria Pallative Care website

The award winning North Cumbria Palliative Care website continues to receive around 30,000 page views a year. This is 82 page views every single day of the year, 2,500 hits every month, without any publicity or advertising program.

1/3/2011

Read More