A nurse is caring for a client who is actively dying

When an actively dying patient asks to die at home, or the family asks to take the dying patient home, enlist the palliative care consultancy service to make an assessment.

Índice Show

Deaths that are reportable to the coroner
Discharge planning and referrals
Other comfort care
Arrangements after death

If you don’t have access to a palliative care consultancy service, ask for help from a clinician with appropriate skills. This may be a senior colleague or a specialist, such as a geriatrician, or a peer.

The assessment should include:

diagnosis of active dying - the patient is approaching or is in the terminal phase
risk of the patient dying while being transported
presence of 24–hour care (carer, family, network)
the ability of the carer, with support, to provide adequate care and symptom management
the carer’s needs for psychological and emotional support and assistance with the patient’s personal, nursing and medical care
home situation, such as who else lives there and any potential risks.

An open and honest conversation with the carer must occur to ensure that the carer understands:

the patient is actively dying
what the carer will need to do for the patient around-the-clock, ideally with the support of family and friends
how family and friends may be able to help, for example by drawing up a roster to help with physical care, to give the carer a break and to prepare meals
how the specialist community palliative care service will support the carer, within the service's limitations - team members from the service will visit and leave again while the carer is always present
what to expect, including information about the dying process
what to do when the patient dies
the limitations of the their capacity as carer.

Reinforce all verbal information for the carer with written information.

Deaths that are reportable to the coroner

Where applicable, confirm that the coroner’s requirements can be met. Deaths that are reportable to the coroner include:

a fall or surgery directly contributing to the death
the patient lived in a group home
the patient was a prisoner.

Inform the carer that death in these circumstances will need to be reported to the coroner and that the implications of this will be:

the general practitioner or the community palliative care service will notify the coroner
ambulance and police will attend after the death
the coroner will decide how long the body will be kept before it can be released to a funeral director.

Inform the general practitioner and community palliative care service that the death will be reportable to the coroner.

Discharge planning and referrals

Phone the referral coordinator at the relevant specialist palliative care service to inform them of the forthcoming urgent referral and negotiate a date and time for them to meet the patient and carer in the home. It may be appropriate for a team member to meet the patient and carer in hospital and start the assessment there.

Co-ordinate the discharge around delivery of equipment and availability of services. Avoid discharging a patient on a Friday or over a weekend or public holiday as services are less available. Discharge earlier in the week and well before a public holiday gives the best chance of establishing care at home and preventing readmission to hospital. Negotiate with the specialist palliative care service about what is possible if time is short.

Phone the general practitioner and update them on the patient’s condition. General practitioners often lose contact with their patients during the treatment phase. Request a home visit as soon as possible but note that many general practitioners no longer make home visits. If this is the case for your dying patient, discuss how the lack of a home-visiting general practitioner will be addressed with the referral coordinator at the palliative care service. Who will manage ongoing symptoms and prescribing? Who will write the death certificate?

If there is an implanted cardioverter defibrillator (ICD) in situ, ensure deactivation to avoid ICD shock. Contact cardiology for advice.

Equipment

Arrange an electric bed to ensure safe care through an urgent referral to occupational therapy. It takes one working day for a bed to be delivered in the city but longer in the country.

Ensure the bed and other equipment are in place for the patient’s arrival home OR ensure the carer and family are prepared to provide all hands-on care until they are in place. Health and safety requirements prevent nurses from providing care to patients in beds that cannot be height-adjusted.

Arrange home oxygen if the patient is oxygen dependent. A medical order must to be sent to the supplier and it will take one working day for delivery of oxygen in the city and longer in the country. The respiratory unit must be notified immediately. Arrange orders for subcutaneous and sublingual medicines and ensure supply.

A continuous subcutaneous infusion (syringe driver or pump) may be the most appropriate means of managing symptoms. If so, arrange continuing and breakthrough orders as well as a week’s supply of medicines.

If a syringe driver is already in situ, ensure the specialist palliative care service can visit in time to refill it. Ensure the battery has at least 80 per cent life. Coach the carer about how the syringe driver works and what to do if it alarms.

Medicines

Ensure ongoing supply of medicines unavailable in the community, such as cyclizine and levomepromazine. This process needs planning because these medicines are costly and hospital executive approval is often required.

Anticipate and prepare for all potential symptoms. Arrange anticipatory medicines.

Other comfort care

Normalise reduced oral intake, coach the carer in mouth care and supply mouth swabs.

Anticipate urinary retention and incontinence – they are common at end of life and can cause acute stress. Consider insertion of an indwelling catheter (IDC) if the patient and carer wish. Ensure the patient is discharged with enough incontinence pads. Email or fax IDC orders to the specialist palliative care service. They may ask you to send them to their partners at a community nursing agency, such as Royal District Nursing Service.

Arrangements after death

You may be asked to supply a death certificate if the patient dies at home and the general practitioner is unable or not prepared to do this. A doctor from the palliative care service may write the death certificate if they have seen the patient.

If the patient’s religious or cultural beliefs require burial soon after death, and they are not a coronial case, document the plan for the writing of the death certificate and communicate it to the community palliative care service and general practitioner.

Introduction Family members look to the physician and nurse to help them know what to expect when a loved one is dying. No matter the underlying causes, there is a common final pathway that most patients travel. Indicate your desire to be helpful. Say, Many families like to know what may happen so they will be prepared, is that true for you? If they say yes, describe the features on this list and answer their questions.

1. Social Withdrawal is normal for the dying patient as the person becomes less concerned about his or her surroundings. Separation begins first from the world – no more interest in newspaper or television, then from people – no more neighbors visiting, and finally from the children, grandchildren and perhaps even those persons most loved. With this withdrawal comes less of a need to communicate with others, even with close family.

2. Food: The patient will have a decreased need for food and drink as the body is preparing to die. This is one of the hardest things for some family to accept. There is a gradual decrease in interest in eating and appetite—even for their favorite foods. Interest may come and go. The patient is not starving to death—this reflects the underlying disease. Liquids are preferred to solids—follow the patient’s lead and do not force feed.

3. Sleep: The patient will spend more and more time sleeping; it may be difficult for them to keep their eyes open. This is a result of a change in the body’s metabolism as a result of the disease. Tell family to spend more time with the patient during those times when he/she is most alert; this might be the middle of the night.

4. Disorientation: The patient may become confused about time, place and the identity of people around him/her. He/she may see people who are not there, such as family members who have already died. Sometimes patients describe welcoming or beckoning. While the patient may not be distressed, it is frequently distressing to family or health care professionals. Gently orient the patient if he or she asks. There is no need to ‘correct’ the patient if he or she is not distressed.

5. Restlessness: The patient may become restless and pull at the bed linens. These symptoms are also a change in the body’s metabolism. Talk calmly and assuredly with the patient so as not to startle or frighten them. If the patient is a danger to himself or others, you may prescribe sedating neuroleptics (e.g.chlorpromazine), or neuroleptics (e.g. haloperidol) in combination with benzodiazepines (e.g. lorazepam), to help the patient rest (see Fast Fact #1).

6. Decreased Senses: Clarity of hearing and vision may decrease. Soft lights in the room may prevent visual misinterpretations. Never assume that the patient cannot hear you, as hearing is the last of the five senses to be lost.

7. Incontinence of urine and bowel movements is often not a problem until death is very near. Invite family to participate in direct care; the nurse can help place absorbent pads under the patient for more comfort and cleanliness, or a urinary catheter may be used. The amount of urine will decrease and the urine become darker as death becomes near.

8. Physical Changes as death approaches:

The blood pressure decreases; the pulse may increase or decrease.
The body temperature can fluctuate; fever is common.
There is increased perspiration often with clamminess.
The skin color changes: flushed with fever, bluish with cold. A pale yellowish pallor (not to be confused with jaundice) often accompanies approaching death.
Breathing changes also occur. Respirations may increase, decrease or become irregular; periods of no breathing (apnea) are common.
Congestion will present as a rattling sound in the lungs and/or upper throat. This occurs because the patient is too weak to clear the throat or cough. The congestion can be affected by positioning, may be very loud, and sometimes just comes and goes. Anticholinergic medications (like scopolamine or glycopyrrolate) can help (see Fast Fact #109). Elevating the head of bed and swabbing the mouth with oral swabs give comfort and give the family something to do.
The arms and legs may become cool to the touch. The hands and feet become purplish. The knees, ankles and elbows are blotchy. These symptoms are a result of decreased circulation.
The patient will enter a coma before death and not respond to verbal or tactile stimuli.

HOW TO KNOW THAT DEATH HAS OCCURRED

No breathing and heartbeat.
Loss of control of bowel or bladder.
No response to verbal commands or gentle shaking.
Eyelids slightly open; eyes fixed on a certain spot.
Jaw relaxed and mouth slightly open.

Acknowledgement: This Fact Fact was adapted with permission from a family information handout (The ‘Blue Sheet’) given to families of San Diego Hospice & Palliative Care Program.

References

Twycross R, Lichter I. The terminal phase. In: Doyle D, Hanks GWC, MacDonald N, eds. Oxford Textbook of Palliative Medicine. 2nd ed. Oxford, England: Oxford University Press; 1998.
Ellershaw J, Ward C. Care of the dying patient: the last hours or days of life. BMJ. 2003; 326(7379):30-4.
Ferris FD, von Gunten CF, Emanuel LL. Competency in End of Life Care: the last hours of living. J Palliat Med. 2003; 6(4):605-613.

Version History: This Fast Fact was originally edited by David E Weissman MD and published in February 2006. Version re-copy-edited in April 2009; revised again July 2015.

Fast Facts and Concepts are edited by Sean Marks MD (Medical College of Wisconsin) and associate editor Drew A Rosielle MD (University of Minnesota Medical School), with the generous support of a volunteer peer-review editorial board, and are made available online by the Palliative Care Network of Wisconsin (PCNOW); the authors of each individual Fast Fact are solely responsible for that Fast Fact’s content. The full set of Fast Facts are available at Palliative Care Network of Wisconsin with contact information, and how to reference Fast Facts.

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