by Father Jim Whalen Priests for Life Newsletter 2006, Issue 3
Caregivers who commit themselves to "Care-Full Living" will find it a difficult yet rewarding experience and challenge. This "end-of-life care" is known as "hospice care" or "palliative care". This means providing the best possible quality of life-care for patients and their families. This covers all aspects of care: spiritual, physical, social, emotional, psychological, and informational issues, while at the same time respecting religious values, beliefs, and cultural lifestyles.
The problem is there is not enough support for people who are dying or for their families. There are about 32+ million people living in Canada. Looking at the statistics for the year 1988, about 190,000 people died. Of that number, 70-80% died in hospitals. About 100,000 of these died without receiving palliative care through formal recognized palliative care programs (Health Care in Canada, Dr. Ralph Sutherland and Jane Fulton, 1988). The present 345+ palliative programs operating in Canada (1990), cannot meet the needs of over 100,000 people who have a terminal or life-threatening illness (Ontario: 143 programs; British Columbia: 63 programs; Quebec: 41 programs). Palliative care is generally limited to patients with cancer or AIDS, and most of
these, about 55,000 are not getting sufficient palliative care (Dying or Care, Harry Van Bommel, NC Press Ltd., Toronto, 1992, p. 35).
Program Standards are a vital element of the palliative care philosophy, providing a flexible and adaptable level of care depending on the client's expressed needs. The Canadian Council on Health Facilities Accreditation (CCHFA), provides an approach in which the emphasis is on organization, policies, and procedures, but the core standards emphasize patient care components. As of 1992, the following standards must be adhered to:
I) Statement of purpose, goals and objectives.
2) Organization and direction.
3) Policies and procedures developed by staff, management, and internal and external services, and communicated to patients and families.
4) Human and physical resources.
5) Orientation, staff development and continuing education.
6) Patient care.
7) Quality assurance.
A palliative care standard should be a combination of peer evaluation and client evaluated system of standards and of quality assurance. Some of the key elements for success in palliative care programs are as follows:
A) Increased public awareness of palliative care.
B) Increased public discussions on the issues of dying and death.
C) Increased acceptance of palliative care as part of health care with a multi-disciplinary approach.
D) Increased acceptance of palliative care in hospitals, patients' homes and hospices.
E) Increased understanding of patient's right to accept and refuse treatments.
F) Increased cooperation among professionals, volunteers, and associations.
G} Increased number and quality of palliative care workshops and conferences.
H) Increased emphasis on a palliative care philosophy of patient-family centered care.
I) Increased promotion of pain and symptom-control technologies.
J) Increased recognition that volunteers are the backbone of palliative care programs.
There must also be clinical standards set for physicians, nurses, social workers, and chaplains to ensure that the highest quality of palliative care is taught, provided, and evaluated. It is crucial that physician standards include teaching palliative care as part of the full medical care of all end-stage patients. Doctors need to acquire a full awareness of therapeutic options available to them to help patients who are dying. The standards would describe expectations of physicians to provide satisfactory sympton and pain control.
Palliative care has definite needs. There is a need to provide an environment of caring and celebration - not distance and depression. There is a need for people who care about others. There is a need to capitalize on people's strengths and previous patterns of behavior: relationships, interests, hobbies, humour, etc. There is a need to provide a wide range of program choices to everyone who wants or needs it. Patients and families have a need to be informed on what they can do and what they can expect. There is a need for increase in home-care supports and hospital back-ups for pain and symptom control. There is a need for an increase in the volunteer component. There is a need as well to address the funding aspects. There is a need to address not only the physical needs but the psychological, social, and spiritual needs. There is a need for patient advocates to help patients and families understand their various options. There is a need for both formal and informal support networking. Formal support includes family doctors, home care nurses, occupational therapists, social workers, home support aides, pharmaceutical support, community agencies that provide meals, house cleaning, etc. Informal support includes: family, friends, and neighbours; members of a faith community or social organization; priests, ministers, or religions spiritual advisors; and volunteers who are willing to visit, read, and provide transportation and share the passingover Journey.
In palliative care the spiritual element, and the tremendous value of the patient and families sense of spirituality, is of paramount importance. The universal questions about the meaning of life and the purpose of living become very relevant. Embracing the passover stage of life; the value of redemptive suffering; and accepting the Cross are essential steps we are all challenged to share. In dealing with doubts and guilt the search for forgiveness and peace are elements we can all experience; The recognition of the great gifts of the healing sacraments, Reconciliation and the Eucharist, can fortify and strengthen both the patient and the family. We can all relate to the power of prayer in healing; and the desire for a closer relationship with God: the Creator, the Saviour, and the Spirit. Encouraging the dimension of gratitude and recognizing the love and happiness that surrounds the patient gives a greater understanding of the past, present, and the future. Spiritual companionship and support is invaluable in this spiritual journey
Euthanasia is not the way to meet the needs of people who are dying. The euthanasia movement is an ill-informed answer to the human realities and dilemmas of death, and of the problems facing our healthcare systems. Palliative care, "Care-Full-Living" is what care-giving and care-sharing is all about - enabling all to live as fully as possible while preparing for our eternal birthday. +
SUGGESTED READING:
Dying for Care, Harry Van Bommel, NC Press Ltd., 1992, 109 pages. A Caregiver's Guide, Karen MacMillan, etc., Trims Printing, 170 pages. A Concise History of Euthanasia, Dowbiggin, Rowan, & Littlefield Pub!., 2005, 161 pages.
Elder Abuse, Euthanasia & Assisted Suicide, Euthanasia Prevention Coalition, 2005, 48 pages.