July 2011: An independent review, led by the chief executive of Marie Curie Cancer Care, Thomas Hughes-Hallettis is calling for a set of universal standards for care of the dying after uncovering "stunning inequities" in provision in England.

The inquiry, requested last year by the government, says the current system is confusing and inconsistent. The report proposes a set of guarantees on what the state will provide, and a new payment system to help more people die at home rather than in hospital. Health charities have welcomed the findings.

David Watt, Managing Director of Nobilis a leading homecare services provider adds, “It is the essence of human kindness and dignity to afford our loved ones the choice to receive the care they need, wherever they wish.  I welcome this review and I hope it will serve as a beacon that choice in care can, and must, prevail”. 

What is Palliative Care?

Palliative care is the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is of the utmost importance.  The goal of palliative care is the achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments.

Palliative care aims to:

• Affirm life and regard dying as a natural process
• Provide relief from pain and other distressing symptoms
• Join together the psychological and spiritual aspects of patient care
• Offer support to help patients live as actively as possible until death
• Help the family cope during the patient’s illness and in their own bereavement

Specialist Palliative Care Services

These services are provided by specialist care teams and include:

• Assessment, advice and care for patients and families in all care settings, including hospitals and care homes.
• Specialist in-patient facilities (in hospices or hospitals) for patients who benefit from the continuous support and care of specialist palliative care teams
• Intensive co-ordinated home support for patients with complex needs who wish to stay at home.
  • This may involve a specialist palliative care service providing advice alongside the patient’s own doctor and district 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 patient’s home, often known as ‘hospice at home’.
• Day care facilities that offer a range of opportunities for assessment and review of patients’ needs providing physical, psychological and social involvement. Many also offer creative and complementary therapies.
• Advice and support to the patient and surrounding family and friends.
• Counselling and coaching to support individuals in coping with change.
• Bereavement support services, which provide support for the people involved in a patient’s care following the patient’s death.
• Education and training in palliative care.

The specialist teams should include palliative specialists eg. medicine consultants, nurses, carers and others such as physiotherapists, occupational therapists, dieticians, pharmacists and social workers.

Is palliative care right for me?

Do you suffer from pain, stress and other symptoms due to a serious illness? Palliative care can be used at any stage of illness, not just advanced stages.  Serious illnesses include but are not limited to: cancer, cardiac disease, respiratory disease, kidney failure, Alzheimer's, AIDS, Amyotrophic Lateral Sclerosis (ALS) and multiple sclerosis.

Who benefits?

The special focus of palliative care is the benefit gained by the patient, family and friends – so everyone!

Where to get palliative care?

Palliative care can be offered in a number of places. These include hospitals, long-term care facilities, hospices and at home.  Usually a team of experts, including palliative care doctors, nurses, carers and social workers, provide this type of care. Chaplains, counsellors, massage therapists, pharmacists, nutritionists, and others might also be part of the team.

Can I get palliative care at home?

Yes.  After symptoms and pain have been managed and are under control, you can discuss and arrange care at home.

What does palliative care involve?

• Pain and symptom control: Your palliative care team will identify your sources of pain and discomfort. These may include problems with breathing, fatigue, depression, insomnia, or bowel or bladder - treatments will be provided that can offer relief. These might include medication, massage therapy or relaxation techniques.
• Communication and coordination: great emphasis in placed on communication between you, your family, your doctors and your carer in order to ensure that your needs are fully met. These include establishing goals for your care, aid in decision-making and seamless coordination of care.
• Emotional support: Palliative care focuses on the entire person, not just his or her illness. Any social, psychological, emotional or spiritual needs you may have will be addressed by the team.
• Family/caregiver support:  Carergivers, too, will be supported through this stressful period – the aim should be to ease some of the strain and help you with your decision-making.

What can I expect from palliative care?

More control and choice and a comfortable and supportive atmosphere that reduces anxiety and stress. Your individual plan of care is reviewed daily by the palliative care team and discussed with you to make sure your needs and wishes are being met and that your treatments align with your goals.

Palliative care focuses on the whole person – helping you to carry on your daily life and supporting you in relief from your symptoms.  It improves your ability to go through medical treatments, helping you better understand your condition and your care choices.  Ultimately the best possible quality of life.

What role does my doctor play?

Palliative care is a team approach to patient care. Your primary doctor will continue to direct your care and play an active part in your treatment working in partnership with the care team.

What is hospice care?

Hospice care focuses on relieving symptoms for patients who have a terminal diagnosis and are usually no longer seeking curative treatment.  Hospice care is provided in the home, in a residential setting, or in the hospital.  Palliative care is appropriate for anyone, at any point of a serious illness. It can be provided at the same time as treatment that is meant to prolong your life.

How do I start getting palliative care?

Start by talking with your doctor or nurse. Tell your family, friends and caregivers that you want palliative care. Be firm and don’t be afraid to ask for what you need.

Is there a palliative care contact in my area?

The National Council for Palliative Care has a network of representatives around the UK supporting local palliative care. Click on the map below or one of the links on the left to find out more about NCPC and end of life care in your area.

www.ncpc.org.uk/in-your-area