Palliative care resources

Palliative care is the treatment, care and support for people from the point of diagnosis of a life-limiting (or terminal) illness.

End of life care involves treatment, care and support for people who are nearing the end of their life; it’s part of palliative care.

Both palliative and end of life care should be holistic and person-centred. This means that by identifying and meeting a person’s individual physical, psychological, social and spiritual needs, we can best look after the patient and their family. At Dorothy House, we know that assessing all these needs will take a range of different members of a multidisciplinary team to manage, and that’s where our approach excels. Many people living with a terminal illness will have lots of different health and social care professionals, volunteers, friends and family members involved in their care.

To support you, we can help to coordinate the best care for your patients. On this page we introduce a range of services for adults living with a terminal illness.

Palliative Care Handbook

The Palliative Care Handbook, commonly known as ‘The Green Book’, has been written to provide advice on clinical management in palliative care. It is a consensus guide for all staff working with patients with palliative care needs.

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GPs

For those living at home or in a care or residential home, their GP is responsible for their medical care.  GPs work with other healthcare professionals to provide the best care for each person.

GPs can:

  • assess someone’s symptoms and prescribe medicines and other treatments to manage them
  • prescribe Just in Case medicines in advance of someone’s symptoms getting harder to manage
  • seek expert advice from specialists when required
  • provide information on the person’s condition and the support services available
  • liaise with the district nurse regarding care at home
  • refer someone to local hospice services.
District nurses

If someone can no longer leave their home or residential/care home due to progression of their illness, a district nurse can help to arrange their care. District nurses can provide medical care such monitoring skin condition, administering medicines, changing dressings and managing symptoms and ordering equipment. District nurses can also arrange certain equipment to make caring for patients at home easier for example, hospital bed and commode.

District nurses also coordinate other services that the person might require. These can include community nurses, healthcare assistants, care workers, Hospice at Home care and more. District nurses work with the person, and those important to them, to prepare a personal care plan. They can then refer them to the best services to meet their individual needs.

District nurses are key workers for palliative and end of life patients.

Good conversations

Ask what matters most

Helping someone plan and prepare for the best end of life experience possible is about so much more than DNACPR forms. It’s about having meaningful conversations over time and supporting them to think carefully about what matters most to them.

What are the things that make life joyful? What and who do we value the most? What makes life worth living for them?

This groundwork is essential to making sure someone is able to make meaningful choices, and prepare as well as they can for the latter years and end of their life.

Good communication matters

As end of life care tends to involve a lot of healthcare professionals, good communication is essential. It ensures that everyone is aware of the patient’s wishes and preferences, and can act accordingly.

It’s good practice to speak with the other professionals involved in the person’s care regularly. Every local area has a system that allows professionals to share information for each individual receiving end of life care. This includes a summary care record that you can access securely online or notes and care plans in the home, if the person consents to having their information shared in this way.

SystmOne is used widely across our area to record specific information, including advance care plans that are accessible to professionals.  The person’s GP should be aware if this record is in place and will have a record of what to do in case of an emergency. The Do Not Attempt CardioPulmonary Resusciation (DNACPR) form can be completed by the GP, or hospital or hospice medics and should be regularly reviewed. The form is kept in the patient records and should be accessible to everyone caring for the person. In some areas, the DNACPR form has been replaced by a ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) form .

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What matters most

Specialist hospice care

Hospice care

Dorothy House provides free nursing and medical care in a friendly and comfortable setting, as well as emotional and practical support. 80% of our care is undertaken in our community – in a patient’s home, a care or residential home, in GP surgeries and various community venues.

We provide day services for people who are living in their own homes. These services include support groups, exercise programmes, art therapy, complementary therapy, counselling and spiritual support. We also provide inpatient services for symptom control, pain management, respite and end of life care. Additiaonly, our Hospice at Home team provides a robust service of night and day care that is scarred out in people’s own homes.

Specialist palliative care team

Our Dorothy House Nurse Specialist are a significant part of the patient’s care team. They help to manage pain and other distressing symptoms, and they will offer emotional, spiritual and psychological support to the person and those close to them. Dorothy House Nurse Specialist can provide care in hospital, at Dorothy House, in someone’s own home or in a care home, alongside the person’s usual healthcare team.

Nutrition in palliative care - a holistic approach to assessment and care planning

Patient led assessment of nutritional care (PLANC) tool

Many hospices around the country have felt, as we did, that the traditional MUST screening tool for malnutrition was not appropriate for palliative care patients.  Building on the work done by Macmillan in the Durham cachexia pack, the team at Dorothy House felt that all of our patients are potentially at risk of poor nutrition and therefore devised an assessment tool that we believe better meets the needs of palliative care patients and those caring for them.

This tool is free for you to use and adapt but if you do use it, please acknowledge Dorothy House and Macmillan and let us know whether it has been helpful and how you have adapted it.

A full report of the project that led to the development of this tool is available on the Foundation for Nursing Studies website https://www.fons.org/library/report-details/70527

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