Palliative and hospice care services can make a dramatic difference in the quality of life of someone who is dying or has a life threatening illness. It also provides valuable support to families and caregivers. This month Elder Voice talks about palliative care and hospice care.
The terms palliative care, hospice care, or palliative hospice care are often used interchangeably. They indicate an approach to the care and treatment of a person with a life threatening disease and to supporting their family and caregivers. For the patient, the focus is on pain and symptom management so that they have maximum comfort and dignity and the highest quality of life possible. It also includes attention to their spiritual, psychological, and emotional needs. For the family and caregivers, palliative care provides support and guidance as well as assistance with the practical tasks of caregiving.
Palliative care is not necessarily restricted to a person who is dying–the patient receiving palliative care may also be receiving active treatment to cure their illness. As such, the expertise of their personnel should be called on in the early stages of treatment of a disease.
Hospice care generally refers to palliative care that is provided at the end of life when the effort to cure a patient’s disease has been halted. “Comfort, not cure” is an expression often used to describe hospice care. This expression underlines the focus on pain and symptom management and psychological needs at the end of life.
A hospice is a setting for terminally ill patients. Hospitals may have a hospice unit. There are also free standing buildings specifically built or outfitted to provide hospice palliative care.
Palliative care is provided through a team of professionals and volunteers. The former includes Nurses, Social Workers, Physicians, Pastoral Care Workers, Pharmacists, Occupational Therapists, and Physiotherapists. Because of their focus, they have expertise in pain control, illness, and death and dying that a family doctor or other practitioners may not have. Palliative care teams see patients in many settings: hospital, in the patient’s home, nursing home, assisted living, or in a specialized hospice facility.
Palliative care services are generally provided through a local health authority or district. Referral usually must come from a physician but can be initiated by a family member, caregiver, or the patient themselves. Once someone has been approved for palliative care services, they are often eligible for specialized benefits such as equipment loans and additional home support and nursing.
According to the Canadian Hospice and Palliative Care Association palliative care should provide the following:
- Pain management – People living with life-threatening illness may experience pain. Families are concerned about pain and how to relieve it. Health care providers work with patients and their families to find out what is causing the pain and the best ways to relieve it. Pain may be managed with narcotics and other drugs and by other means such as massage therapy and relaxation exercises.
- Symptom management – Often people have to deal with a variety of other symptoms. These can include loss of appetite, nausea, weakness, difficulty breathing, bowel and bladder problems and confusion. Palliative care can help relieve these symptoms that may be very distressing.
- Social, psychological, emotional and spiritual support – The health of the whole person is important in palliative care. Because of this, palliative care services provide many different kinds of support to both the individual and family.
- Caregiver support – People may be concerned about whether they will be able to look after their ill family member, especially when the person is being cared for at home. Palliative care services that help the family cope include:
- advice and assistance from health care providers such as nurses and doctors who are skilled in providing palliative care.
- instruction on how to care for the person. For example, how to give medication, how to prevent skin problems, how to recognize when the person is close to death and what to do at that time.
- home support services that provide assistance with household tasks such as meal preparation, shopping and transportation.
- relief for the caregiver. Sometimes a volunteer stays with the person so the family caregiver can go out. In other situations, the person who is ill may go to a day program or enter a hospital or long-term care facility for a short period of time.
If you, a family member, or friend has been diagnosed with a life threatening disease be sure you inquire about palliative care services as part of the approach to dealing with the illness. These services can improve the quality of life for a patient, and help with the stress, exhaustion, and emotions experience by the family and friends who are giving care.
Sometimes it is not possible for a dying person to spend their last days in their own home, despite their wish to do so. This may be due to the complexity of pain or symptom management or because the tasks involved in providing care are overwhelming for family or caregivers. If this occurs it may be necessary to consider a hospice facility.
A hospice is designed and furnished to be a peaceful and homelike setting. Skilled nursing staff are present 24/7. They and the other team members have been trained specifically to provide care and comfort to a dying person and the family. Family members are generally welcome at all times, and may even be able to sleep in the patient’s room.
There are often specific criteria for admission to a hospice. These may include the cessation of attempts to cure the disease or a physician’s assessment that death is likely within a specified amount of time.
The decision to go to a hospice can be a difficult one. It is an admission that there is nothing more that can be done, and that a cure is impossible. Family members may feel disappointed in themselves, as though they are failing. They may also feel as if they are letting down their loved one by not being strong enough to keep them at home at home. They may feel guilty that they are not able to meet the person’s “last wish” However, once the decision has been made, and the patient moved, people generally come to accept that it was the right decision. The patient often feels better because they are receiving the care they need to be as comfortable and pain free as possible. The family is then free to concentrate on providing emotional support, and being simply family. If the hospice setting is not working for any reasons, it is always possible to make a care plan for support and services, leave the hospice, and go home.
Many communities do not have a free standing hospice facility although they may have palliative care; but most larger urban areas have both. Ask your physician, social worker, or palliative care worker about the availability of a hospice in your area, and the criteria for admission.