Palliative care resources

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.

For those living at home or in a care or residential home, their GP is responsible for their medical care.  GPs work with other health and social care 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.
• refer someone to Adult Social Care

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.

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 they 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 Cardio Pulmonary 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.

Additionally, the ReSPECT form (B&NES, Wiltshire and Swindon) and STEP form (Somerset)  are summary plans for emergency care and treatment. It’s a clinical record of the person’s medical wishes for the future. Read more about these and download a copy here.

Hospice care

Dorothy House provides free nursing and medical care, as well as emotional, spiritual and practical support. 80% of our care is undertaken in the community – in a patient’s or family member’s home, a care or nursing home, in GP surgeries and various community venues. We support the person with the palliative condition, their family members (adult and children), and bereaved people. Our services include support groups, exercise programmes, art therapy, complementary therapy, social work, counselling and spiritual support. Our Nurse Specialists are a significant part of the patient’s care team. They help to manage pain and other distressing symptoms, work with the patient to create an Advance Care Plan, and they will offer emotional, spiritual and psychological support.

We also provide inpatient services for symptom control, pain management and end of life care. Additionally, our Hospice at Home team provides a robust night and day, nursing and personal care service, carried out in people’s own homes.

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