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EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association EPDA - European Parkinsons Disease Association
PARKINSON'S DECISION AID
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2. Palliative Care Treatments

Palliative care principles can and should be applied by any team, anywhere in Europe. Everyone’s needs are different and palliative care provision varies both internationally and regionally; various medical and medically-related services may be involved and your doctor will be able to advise on treatments as needs evolve.

Important!

It is important to remember that depending on the country in which you live, palliative care may be provided by a range of doctors including one who specialises in care of the elderly, one who specialises in Parkinson’s or one who specialises in palliative care.  In some countries Parkinson’s Disease Nurse Specialists may also be involved but in other countries they are rare or do not exist at the present time. 

Of course professionals within the multidisciplinary team (MDT) will each have their own particular expertise and can be called upon as required.  Many members of the traditional MDT may still be involved when the palliative care stage is reached but the emphasis of their involvement is likely to alter.  For example, a physiotherapist can still provide support but whereas previously they may have helped with mobility, the emphasis might move to easing breathing by gentle chest physiotherapy. Similarly, a speech and language therapist who previously advised on communication could now advise on artificial feeding methods if swallowing is no longer possible.

For care to be as effective as possible it needs to be integrated so that all those involved work together as a team.  This can be a complex challenge but increasingly there are palliative care strategies (also known as ‘care pathways’) in place to ensure effective and quality care.  These support the person with Parkinson’s, their family and the multidisciplinary team in planning and delivering coordinated, seamless and prompt care, according to need, ensuring all parties are actively involved.  Across Europe, the degree to which the different elements of palliative care are integrated and coordinated varies considerably, but where such integration exists, access to palliative care is much simpler and beneficial for everyone.

The treatments that should be available to you include:

  • medication
  • physiotherapy
  • occupational therapy
  • speech and language therapy
  • complementary therapies
  • clinical psychology
  • diet and nutritional support.

 

The medical and medically-related services that can be involved in palliative care:

  • Assessment, advice and care for the person with Parkinson’s and their family, in all care settings, including hospitals, hospices and care homes, to ensure access to a range of palliative care specialist professionals and support services

  • Specialist in-patient facilities (in hospices or hospitals) for people who benefit from the continuous support and care of specialist palliative care teams

  • Specialist palliative community care provided mainly by teams of clinical nurse specialists for those with complex needs who wish to stay at home

  • this may involve the palliative care team providing specialist advice alongside the family doctor and community nurse to enable someone to stay in their own home

  • many teams also now provide extended specialist palliative nursing, medical, social and emotional support and care in the home, often known as ‘hospice at home’

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  • Other community health services – including the family doctor, a Parkinson’s specialist nurse if available, various therapists (for example physiotherapist, occupational therapist, speech and language therapist) and a dietician with specialist knowledge of advanced feeding techniques

  • Hospital services – including a consultant or clinical nurse specialising in palliative care, plus Parkinson’s specialist advice and support

  • Social services - a palliative care social worker can assess needs, advise on financial and legal matters, and help with filling in forms.  They will also provide emotional support in listening and using their counselling skills, and advise on and set up appropriate support care (for example day care, respite care, nursing home or hospice care).   Moreover, they can act as a valuable interface between the various groups of people involved so that care is as seamless as possible

  • Mental health services – including psychologist, old age psychiatrist (also called Psychogeriatrician or Specialist in Psychiatry of Old Age), counselling and advice, and day care

  • Day care facilities - that offer a range of opportunities for assessment and review of needs, providing physical, psychological and emotional interventions alongside social interaction, support and friendship. Many facilities also offer creative and complementary therapies

  • Advice and support - including financial, legal and practical matters.  These may be state funded organisations or independent advice services

  • Education and training in palliative care

  • Voluntary organisations - information and advice, telephone helpline, volunteers and community support workers, support group networks

  • Religious groups - including a priest or rabbi, for example

  • Bereavement support services, which provide support for those coping with bereavement.