Where should palliative care take place?
Palliative care is developing as a service. Palliative care is not a core heath service everywhere. Without this designation, it is a lesser priority in the health system. Transitioning from disability to end of life services can be difficult.
According to the Public Health Agency of Canada, the "distinction between palliative care and hospice care is often unclear and in Canada, these terms are often used interchangeably. Some would distinguish hospice care as end of life care offered in the community rather than in hospitals. Although hospice care is usually provided in the patient’s home, care is also provided in hospice centers, hospitals, nursing homes and other long term care facilities."17
Palliative care in hospitals:
Is usually paid for under provincial health plans which will often include medical supplies, drugs, equipment and professional care as long as the patient is in the hospital. In some hospitals there is a special designated area for palliative care patients while in some other hospitals there are beds set aside in various sections of the hospital for people needing palliative care.
Palliative care in long-term care facilitates or nursing homes:
Many people receive palliative care in these types of facilities, which are less likely to have specialized palliative care units. These are often under funded or receive no provincial funding at all. There is also usually a daily room and board fee in continuing care centres or hospices, which the patient or their family must pay. Residents who require more specialized palliative care services may need to resort to hospitalization because long-term care facilities cannot support their needs.
Palliative Care at home:
Some people receive end of life care at home from informal carers, usually friends or family. According to the Public Health Agency of Canada only some aspects of home-based palliative care may be paid for by the provincial health plan. These plans do not always include the cost of drugs and equipment such as pain pumps, oxygen, and commodes and may only pay for a limited number of hours of professional and home support. Because of the high cost of these supports "people may need to use private insurance, personal savings, or contributions from social agencies and service clubs to cover costs." Many people are forced to go into hospitals instead of dying at home.18
Physical Access:
Research done by VP-Net Team members, Deborah Stienstra and Rhonda Wiebe has found that "Places for people with disabilities are often separated from the rest of society or are seen to be residual, left over in society." As a result, people with disabilities have "few choices as they experience significant health and life transitions" which may leave them only options that increase their vulnerability. Some people lose access to their children, have to move far away from their friends and family or have to create new 'homes' during transitions. For some the only choice is to move into a separate place like a long-term care facility.19
The physical environments of palliative care wings, because they were originally set up for cancer patients, are often not accessible or not equipped for people with physical disabilities. This has often led to the segregation of people with disabilities to separate wings of the hospital rather than improvements in the original palliative care section.
Physical inaccessibility is compounded by the fact that support workers in palliative care are often unaware of available accommodations or don’t realize how important these can be for sustaining meaning, hope and comfort at the end of people’s lives.
There is also a lack of flexibility in the existing hospital system in allowing people with disabilities to bring care providers they know with them into the hospital. People with disabilities often experience a fear about discontinuity of care when going into the hospital. People who have spent their lives finding and training people to provide their care are often reluctant to have to go under the care of a whole new group of people who don’t know or understand their needs. 20
Inaccessibility due to Curative/treatment issues:
Although most research focuses how different illnesses influence the type of course of life toward death a person experiences, VP-Net researchers are interested in how other factors such as a pre-existing disability, employment or economic status, the availability of disability supports, or cultural and ethical issues can shape the path toward death and people’s healthcare needs.
Because palliative care was originally developed to help patients in the end stages of cancer deal with pain and suffering, palliative care practitioners are often less informed about and overwhelmed by the perceived and real care needs of people with disabilities.21 Cancer has a simple course or decline toward death which makes it easier to judge how long the person will live and when to begin palliative care. Usually, as curative treatment declines the focus on palliative care increases.22.
Palliative care is now expanding to include a wider variety of people, including people with disabilities and other vulnerable populations, who come with a variety of other conditions and/or impairments. Chronic conditions with a slow deterioration or the frequent waxing and waning of symptoms produce a course that looks very different from cancer patients; it tends to be far less predictable, fluctuate considerably and may last longer. There are three main types of courses in end of life transitions that require different types of care interventions:
- peaks and valleys;
- descending plateaus representative of general deterioration with periods of no change;
- downward slopes where the disease is progressive and deteriorating; and gradual slants that are representative of a more slowly moving, even descent to poorer health.23
Feeling overwhelmed or helpless by this kind of diversity and higher demand may lead doctors to believe certain patients can’t be helped. Stienstra and Chochinov argue that in this situation, it is likely "options that would normally be offered are withheld or deemed inappropriate based on the judgment that, because of a patient's disability, their application would be unnecessary or futile." 24
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