HOME CARE

The following issues are important:

1. Choosing the place of care

2. The place of death

3. Symptom control at home

4. Team communication

5. Family communication

6. The burdens on carers

7. Visitors

8. Practical suggestions

9. The terminal phase at home

10. After a home death

1. Place of care:

«  Home can be the very best or the very worst place to die.

The advantages of home care include:

• Feeling secure

• Flexible routines

• Reduced medical intervention

• The patient remains part of the family

• Control (professionals become the visitors)

On the other hand, isolation and physical suffering can be extreme if patients at home are neglected, if physical symptom control is inadequate, and if family carers (or neighbors and friends) cannot obtain adequate assistance and support.

Even if a patient lives alone, it is still possible to offer home care. Neighbors, friends and community volunteers can sometimes agree to a roster of daily responsibilities. It is best for one person (a neighbor or friend) to assume primary responsibility for liaison with the home care team, and for scheduling.

The prime factor in deciding where a terminally ill patient should be cared for is the patient’s own wishes. Some patients feel that a hospital is no place for a person who is seriously ill. Other patients feel more secure in an in-patient setting. Some may fear “becoming a burden to their family” if they choose to stay at home. It is important to listen carefully to the patient. While every effort should be made to comply, the patient’s wishes have to be considered in light of practical issues such as the availability of professional and volunteer support, and the attitudes and abilities of family members.

Hospice involvement needs to occur early, when patient and family members have time to build trusting relationships with team members. The home care team needs time to make sensible plans.

2. Place of death:

«  Death is a social event, not a medical event.

One of the most important and difficult questions that professional carers need to ask patients - gently and at the right time - is “If the time comes for you to die, where would you like to be?” One way of raising this issue might be through a discussion about a living will. (see Living Will)

The terminal phase in the home is usually straightforward if the family has been well prepared. The family may or may not want a member of the home care team present. This preference should be respected.

As the disease advances, many families are unsure of whether they can continue to cope at home. Appropriate encouragement and support may enable them to do so.

Some families find they simply cannot manage (because of carers’ ages, work schedules, traveling distance, or other practical or psychological problems). A planned, timely admission to an appropriate in-patient facility may be necessary. It is essential at this time to encourage discussion between the patient and family to avoid feelings of resentment or guilt.

«  The precipitate transfer of a patient from home simply to die elsewhere a few hours later can rarely be justified. It is too often the mark of a family poorly supported by professionals.

3. Symptom control at home – Excellent symptom control is almost always possible in the home, given willing carers and a competent home care team.

The most difficult condition to manage at home is confusion. (see Confusion)

Other difficult problems are severe diarrhea, heavy bleeding or seizures, although even these situations can be managed in the home.

Intestinal obstruction can be managed medically in the home with a continuous subcutaneous infusion of appropriate drugs. Terminal dehydration rarely causes thirst, but if thirst becomes a problem in a patient with dysphagia, it can be simply managed in the home by giving a tap water enema using a urinary catheter.

Procedures such as aspiration of pleural effusions or ascites, and some nerve blocks, can all be performed in the home. There is no justification for sending patients to the hospital for simple procedures like insertion of a urinary catheter. Even if a brief out-patient visit to the hospital is occasionally needed (for example, for a single dose of radiotherapy for bone pain) the appointment can be precisely scheduled to cause the least possible inconvenience to patient and family.

It is sometimes assumed that some treatments are not suitable for home care, but we need to question whether these beliefs are related to tradition or to practicality. Home care team members must be prepared to act on occasion as advocates not only for their patients, but for home care itself.

4. Team communication:

«  Communication between the home care team and family members (to explain and reassure) is usually the single most important element in enabling care to take place at home. Home care arrangements can break down if simple reassurance is lacking at a critical moment.

«  Family members are part of the caring team.

Family members are often uncertain about whether they will cope. An encouraging comment from a member of the home care team (“We think with our help you will manage very well.”) can give a family enough confidence to continue.

The home care team must communicate together. Care must be coordinated to be effective. Conflicting advice (especially about prescribing) destroys trust. Failure of home care team members to keep their promises to patient and family (about the date and time of the next visit, for example), or to respond promptly and courteously to telephone calls, destroys trust.

The home care team must help the family to anticipate problems. Anticipation saves time and energy. For example, if a patient is becoming incontinent, it is wise to cover the mattress with a plastic sheet before it is soiled.

The prepared family will have fully discussed their worries before the terminal phase:

• What will happen?

• Will we cope?

• What about the children?

• How will we know he’s dead?

• Whom do we contact if we need to?

• What do we have to do afterwards?

5. Family communication – Many families need help in communicating together when one member is dying.

Poor communication is a common reason for breakdown of home care arrangements. Communication problems often cause tension and irritability. The patient too often becomes isolated by a “conspiracy of silence”. No one talks of the illness or of dying, for fear of upsetting the others. A skilled professional or volunteer can often bring great relief to a family simply by seeing them together, asking what each understands about the illness, and encouraging them to share their feelings together. (“How is your husband’s illness affecting you?”) (see Communication Problems, Family Meetings)

Children of all ages cope very well with death provided they are included in the event, encouraged to ask questions, allowed to help from time to time, and later encouraged to express their grief (through drawings and play). (see Children, Grief)

6. The burdens of carers – It is essential for families to organize their own schedule of caregiving. Carers need to rest, and to leave the house from time to time.

Carers are often expected to cope with complicated problems, such as:

• Giving medications

• Monitoring symptoms

• Nursing tasks

• Learning new skills (such as lifting and moving the patient)

• Living on a reduced income

• Adapting the home

• Adopting new roles (highly stressful)

• Emotional pressures

• Explaining to others

• Allowing anticipatory grieving

Physical exhaustion leaves less energy for emotional problems. Family carers suffer from emotional exhaustion (“burn out”) as well as professionals. (As one daughter said, “Nobody ever asks how I am. I could scream every time the phone rings!”) Hospice day care and brief inpatient respite care can be important in helping fatigued family carers. (see Burn Out, Day Hospice, Respite Care)

7. Visitors – Too often visitors exhaust both patient and carers. A schedule of visiting times is helpful, and can be organized by a firm, tactful family member or friend. It can bring great relief to ask whether visitors are proving tiring, and for a restriction on times and numbers of visitors to be “prescribed” by the nurse or doctor. (see Visitors)

8. Practical suggestions – The ideal sick room is light and airy, with a comfortable bed, a high armchair, a pleasant view, a convenient telephone, a remote-control TV and an adjacent bathroom. A V-shaped pillow and a light, colorful quilt can make life in bed more bearable. In hot weather, air-conditioning (or at least an electric fan) can be helpful. Most important of all, the sick room should be one in which the patient feels at ease, and which is not isolated from the rest of the house.

Home care of terminally ill patients can be made considerably easier by the use of simple aids and appliances. Rental is usually preferred to purchase, as different equipment may be needed at different stages. (Some hospices and home health organizations maintain an “equipment closet” for free borrowing.) The use of complicated (and often expensive) medical equipment requiring frequent professional interventions should be avoided.

Aids to mobility:

• Appropriate footwear (if feet are swollen)

• Cane or tripod cane

• Zimmer walker

• Raised toilet seat

• Wheelchair

• Bathing aids (bath seat, non-slip mat)

• Adaptations to living area (handrails, ramps)

Aids for bedbound patients:

• Easily removable bedding

• Bedside light, handbell

• Tissues and basin (for mouth rinses)

• Backrest or V-shaped pillow

• Trapeze bar

• Legrest or cradle

• Hoyer lift

• Bed table, book stand

• Fire-resistant apron (for smoking in bed)

Equipment for symptom control:

• Drug card

• Portable subcutaneous infusion pump

• Compression sleeve (for lymphedema)

• Nebulizer

• TENS machine

• Heating pad

Equipment for skin care:

• Sheepskins

• Heel and elbow pads

• Spenco mattresses and cushions

• Ring cushion

Incontinence aids:

• Bedpan or urinal

• Portable commode

• Disposable underwear and pads

• Protective undersheet

• Urinary condom or catheter

Eating aids:

• Insulated carafe (for cool drinks)

• Ice-maker

• Blender (for dysphagic patients)

• Microwave oven

• Flexible straws

9. The terminal phase at home – As death approaches, it is important for home care team members to remember the following:

• Maintain analgesia (morphine can be given by suppository or continuous subcutaneous infusion).

• A continuous subcutaneous infusion can be very useful; methotrimeprazine will control agitation and scopolamine will dry up secretions and control bubbling.

• Patients may require an indwelling urinary catheter or urinary condom in the last few days, but only if necessary.

• A schedule of caregiving continues to be important, as an expected 24-hour vigil can turn into a long week of waiting.

• Rehearse emotions and procedures. (“How will you feel?” “What will you do?”)

• Teach the family to recognize the signs of death, while explaining that even nurses and doctors are not always sure of the moment death occurs. Explain that the body need not be removed immediately, and can safely remain at home for several hours following death.

• Encourage the family to include children. Explain to them. (“Grandma will stop breathing soon and get very still, and then she will have died.”) Give them jobs to do to be useful.

• A 24-hour telephone contact to the home care team is very important, and is very rarely abused.

• Advise family members not to dial 911 as death nears, to preclude the likelihood of resuscitation efforts or ambulance transportation to the hospital emergency ward.

• Arrange with the attending physician to come to the home to certify the death, in states where nurses are not yet authorized to do so.

10. After a home death, families often have a sense of achievement. (“We are so glad we were able to keep him at home.”) This is usually a comfort in their grief, and facilitates the normal grieving process. A death at home can be a sad but profoundly moving experience which paves the way to eventual healing and growth for the family.

“I was dreading this last part, but every day has been a memory to treasure – I wouldn’t have missed it for the world.” Mrs. G.T. (whose husband was dying at home)

The author and publisher have taken precautions to ensure that the information in this book is error-free. However, readers must be guided by their own personal and professional standards of good practice in evaluating and applying recommendations made herein. The contents of this book represent the views and experience of the author, and not necessarily those of the publisher.