Whole Person Care: Quality of life is not just about physical health

21 November 2007

The first clinical session of the 18th International Symposium on ALS/MND on palliative care paid tribute to the work of Dr Balfour Mount, MD, one of the pioneers in this area.

Dr Mount devoted himself to spreading the principle of whole person care throughout modern medicine.

Whole person care is about quality of life and the individual. The existential/spiritual domain is known to be an important determinant of quality of life, yet there has been little emphasis on integrating this in health care.

During his presentation Dr Gian Borasio from Germany spoke about the overlap that exists between whole person care and palliative care. Dr Borasio outlined how palliative care should transcend the physical dimension and start the moment the diagnosis is given, right through to bereavement counselling for the family.

Symptom control is not enough. Professional caregivers must offer spiritual and psychosocial care as well. Dr Borasio says: “A history of ALS/MND is a history of losses. But this is not the worse. The worse is the emotional losses – dignity, hope and faith.”

Research in ALS/MND has been pivotal in showing that quality of life in severely ill patients is not primarily dependent on physical function, but rather on non-physical determinants such as hope, dignity, personal values, social relationships, meaning in life, and spirituality.

Data from recent studies show how each of these concepts strongly influences subjective well-being and end-of-life decisions. The family plays a crucial role, both as the main factor influencing quality of life and as part of the “unit of care”.

Since at present the main goal of care in an incurable disease such as ALS/MND is the maintenance of the highest possible quality of life until death, a higher proportion of the available resources should be devoted to the development and implementation of interventions in these areas.

Dr Borasio concluded by saying that it is important to address the non-physical determinants of quality of life which creates space for healing. “Whole person care goes beyond the physical, beyond the patient and beyond the patients death.”

Tony Sonn who was diagnosed with MND in April 2002 outlines his feelings on whole person care: “Whilst research is of prime importance (we wait for a cure everyday) we must not forget the total care of patients and the families.

'One person cannot judge the quality of life of another. It may be waking each morning to see the sun rise, or hear a bird sing, or have a visit from family and friends. This is a great quality of life and we must enhance this to the best of our ability and not judge, for we all live in hope until the moment we die.”

Mel Barry Communications Manager
01604 611887/07918 652201
mel.barry@mndassociation.org

The 18th International Symposium on ALS/MND is taking place in Toronto, Canada, between Saturday 1 and Monday 3 December. The event is organised by the UK-based Motor Neurone Disease (MND) Association and hosted this year by the ALS Society of Canada.

People living with MND face uncertainty from diagnosis and must deal with a series of losses which not only involve changes in physical ability but may also affect people psychologically, spiritually and socially. The impact on families and carers must also be considered.

The MND Association Standards of Care state that following diagnosis, people living with MND should have access to appropriate expertise and services at the appropriate time including specialist palliative care.

Palliative care should integrate the psychological and spiritual aspects of patient
care; provide relief from pain; offer a support system to help patients lives as
actively as possible, and offer a support system to help the family cope during
the person’s illness and in their own bereavement.