Caring for someone at the end stage of life

Submitted by Emma Hamilton on Wed, 04/05/2011 - 3:20pm

Carers can help a dying person in many ways. Gentle conversation, massaging someone's hands and playing music are some of the things you can do to create a peaceful environment.

Knowing that a loved one is in the room can bring much comfort to a dying person.

In this article:

Organising support
Creating a comfortable environment
Skin care
Coping with physical changes
Maintaining comfort

Organising support

Carers can feel very helpless, over-burdened or uncomfortable caring for someone in any capacity at this stage. Expect to feel a range of emotions. Talking with the palliative care team about your concerns always helps. If you can’t cope let people know.

Organising a support person at this stage is also vital. Try taking some time out to exercise or see friends. Taking care of your own well-being will ultimately give you the energy to care for your loved one.

Discuss with a support person your loved one's wishes and preferences for after death so they can help you when the time comes. A doctor or palliative care nurse can also tell you what to do at the time of death.

Friends and family may want to visit regularly, try spacing the visits and see how your loved one feels on the day. Try and arrange for people to visit when your loved one is most alert. This means taking into consideration their shower, sleep or medication times.

If your loved one is in an aged care home they may be moved to a private room where family members can come and go or stay overnight.

Creating a comfortable environment

You can help maintain a calming and comfortable environment by organising a special place for a dying loved one. This may mean choosing a favourite room with a view or redecorating a room for comfort. Photos of family, fresh flowers and music can be soothing.

Try arranging furniture to allow for lifting or other medical equipment. As a loved one spends more time in bed consider the use of an electric bed to make attending a loved one's care needs easier. You may also like to make extra space by the bed for comfortable chairs for family members to sit on. For sleeping overnight a fold out bed can come in handy.

Be sure to regulate room temperature according to your loved one's level of comfort. A room with adjustable lighting, fresh air and a fan can also help. Try placing a lamp next to the bed or using night lights for visibility whilst attending to care needs overnight. Use light cotton blankets for comfort.

Keep a table close by with equipment you may need such as mouth washes, lip balm, tissues, and moist face cloths. Keep some spare towels handy and extra Kylies (special incontinence sheets) for the bed.

Music and aromatherapy

Playing someone’s favourite music can be of great comfort to a dying person and those around them. Music can revive memories, be consoling or cheerful at such a time. Playing recordings of family member's voices especially those that live far away can also be calming.

Burning essential oils via a vapouriser can be soothing for the dying person and the carer. Place a couple of drops of essential oil on the sheets ( not close to the face where it can be overwhelming) to disguise odours from wounds and incontinence. Others may find particular smells unpleasant or irritating at this time.

Massaging a person with the addition of an essential oil or gentle stroking of the limbs can be soothing, reduce anxiety and increase comfort for the dying person. Simply stroking a hand can be comforting, others may prefer not to be touched and it may be painful.

Skin care

Older people are especially prone to skin breakdown. At the end-stage of life when a person may be bed-bound maintaining skin integrity and preventing breakdown will ultimately increase comfort.

At this stage attempting to heal an already existing wound ulcer may be ineffective. Creams that enhance hydration or disguise odourous wounds can increase comfort and protect the skin.

For an older person who is bed bound and cannot position themselves comfortably, special mattresses can enhance comfort by relieving the pressure on prominent parts of the body such as the shoulders and the bottom. It is important to keep in mind when repositioning a person whether turning someone too frequently will actually cause more discomfort.

Pressure area mattresses will relieve the pressure felt when lying in the one position for long periods. Air mattresses, varying egg shell mattresses or over lays will also increase comfort and reduce the risk of pressure areas.

Pressure areas

For the very frail person at risk of skin breakdown the use of Australian Medical Sheepskin products can help protect vulnerable areas such as elbows, heels and buttocks from pressure and increase comfort when lying in bed for long periods. However, how effective they are in preventing ulcers will be influenced by the person’s unique circumstances and condition.

In general, sheep’s wool products such as underlays, booties, arm protectors (without the Australian medical sheepskins tag) can simply increase comfort.

Coping with physical changes

Breathing problems

When the person you are looking after becomes breathless you can elevate the head of the bed or prop them up with pillows. Try placing a fan in the room, or open a window near the bed. Oxygen may also be prescribed for respiratory distress.

Cheyne-Stokes breathing is a common breathing pattern associated with end of life characterised by a sudden stopping and starting of breath. It can sound very noisy, crackly or laboured. Carers can find Cheyne-stoke breathing difficult to listen to but it is not distressing for the person.

Respiratory secretions

Respiratory secretions can occur when a person cannot clear their airways of congestion. The person's breathing may be loud and gurgly. A carer can reposition the person into a semi-upright position. Certain medications can also help reduce secretions, ask a doctor or palliative care nurse.

Loss of appetite

Watching someone stop eating or drinking can be distressing for a carer. At the end of life if the person you care for is disinterested in food, pushes it away or refuses any offer of food, it is better not to push it. They may not actually feel the sensation of hunger or thirst.

Mouth care

Toward end of life a person may not be capable of swallowing or feel thirsty. Moistening the mouth with a special mouth swab and applying balm to moisten lips can help. Always ask your palliative care nurse for guidance before putting anything in a person's mouth.

Toileting

Constipation is common at this stage due to immobility, dehydration and as a side effect of morphine. Suppositories and some oral medications can help relieve constipation. Remember bowel habits will change as dietary intake decreases. Incontinence of urine and faeces can be managed with incontinence pads.

Swelling of the limbs

Bed cradles can protect the limbs from the pressure of blankets. Oedema of the lower limbs is common and can be painful when there is loss of fluid or weeping from the tissues. A cradle placed at the end of the bed can relieve the direct pressure of heavy blankets on lower limbs. Try placing a Kylie or towel under weeping limbs to prevent excess moisture on the skin.

Maintaining comfort

The palliative care team will do everything possible to make sure a dying loved one is comfortable and free of pain. This may mean using a number of different medications including morphine.

Medications for pain can now be given orally, via a patch or via a subcutaneous infusion or syringe driver.

Always notify a nurse or doctor if you feel your loved one is in pain. Medication will often need adjusting to ensure a person is comfortable and pain free.

Towards the end stage of life a person can show signs of agitation and restlessness. This can be very distressing for a dying person and a carer. Calling out, moaning or confused speech can be associated with delirium or discomfort.

Describe these symptoms to your doctor as they can be relieved by medication or could be related to problems with constipation, medication or urinary retention.

Remember, you are a part of the palliative care team and don't be afraid to speak up. Ask questions when you need to and seek out the support of others when you can.

A social worker, palliative care nurse or spiritual advisor are some of the people who can support you and your family at such an emotional time.

Helpful resources

To find information and support, helpful articles about palliative care and useful links visit Palliative Care NSW.
For help with caring for a dying love one at home contact Home Hospice, an organisation dedicated to supporting people who wish to care for dying family members at home with the help of a palliative care team, family and a volunteer support person.

References

Commonwealth of Australia 2006
The National Palliative Care Program
Guidelines for a palliative Approach in Residential Aged Care

Palliative Care Dementia Interface: Enhancing Community Capacity Project. 2006
University of Western Sydney 2006
Information for families and friends of people with severe and end stage dementia

National Institute on Aging
Providing comfort at the end of life
Accessed December 2008