Hospice resources
The purpose of this page is to;
introduce a hospice environment
introduce common terms which you may come across
identify ways that the setting works
identify ways you can prepare to engage and recruit in the hospice environment
Why do research in a hospice?
The UK is a world leader in palliative care services. The National Institute for Health and Care Research (NIHR) supports research to improve the quality of life of people with terminal illnesses, hospices and community healthcare settings. To support this, the NIHR has partnered with organisations such as Hospice UK to focus on Hospice and Community Research. Hospice patients deserve to have the best and to have access to evidence-based treatment. Evidence gained through research is vital to demonstrate cost-effectiveness in a hospice and help negotiations with commissioners.
Here is a video by the West Midlands which introduces why research in hospices is important and introduces research ready hospices.
The Prognosis in Palliative Care Study II (PIPS2) study leaflet here gives you the aims of the study, background, study population and the carers, hospice and researchers perspective.
Here is a video which introduces Sandra's Story; taking part in a palliative care research study in the East Midlands
Introducing a hospice environment
Hospices provide care for people from the point at which their illness is diagnosed as terminal to the end of their life, however long that may be. Research in this area can be called end of life care, palliative care or research with hospices.
Holistic care focuses on the whole person, not just the condition which includes their physical, psychological, social and spiritual wellbeing.
So what do hospice services look like;
Inpatient services (short term care):
End of life care.
Symptom control admissions.
Hospice services can include;
Day centres facilities or day therapy centre or day hospice
Symptom management including Pain, Sickness, Fatigue, Anxiety, Breathlessness and Medication reviews.
Complementary therapies, e.g. Aromatherapy, Massage, Reiki, Reflexology etc.
Educational sessions on management of pain, breathlessness, fatigue and anxiety – these are based on a non- pharmacy approach where possible and patients learn about diversional tactics and coping strategies.
Psychology services.
Chaplaincy service
Carer support services.
Bereavement services
Top tips;
Family members are very much involved in hospice life. As well as patients being able to access complementary therapies and counselling, family members can too.
Many staff at hospices are employed but a lot are volunteers.
Make sure to build up a rapport with the team, they are very protective of their patients, explain research to the staff, build relationships and work together to make outcomes better for their patients and carers.
There is a Multi disciplinary team which can include Drs, Ward nurses, HCAs, Nurse specialists i.e. motor neurone disease MND nurses, out patients, day therapy, counsellors, physios, OTs, dietitians, speech and language therapists, pharmacy team, volunteers.
There is usually a Palliative Care Clinical Nurse Specialist (sometimes known as Macmillan Nurse) - they are the link between GP, Hospice, District Nursing team (they do general care). They liaise with any consultants in the care and usually bridge the gap between all.
A lot of hospices do not receive government funding - sometimes this can equate to 30%. Hospices may receive money from charity trusts. Some hospices are purely charitable.
Do not underestimate how useful a research board, poster and research certificates can be in hospice to promote research and the NIHR. Work with the hospice to help them create a research board or a research page to their website.
The palliative patients are on a journey and have the chance to plan for their future care and end of life strategy. When they are ready to discuss they have the opportunity to discuss their wishes about preferred place of care and preferred place of death.
Do not resuscitate status. They have the right to refuse treatments to prolong life. Other than treatments which will promote comfort etc.
Sometimes a hospice has a traffic light system for the day centres - blue is an introduction so early in diagnosis, amber - their condition has deteriorated, may need coping strategies or meds, then red days - fast approaching end of life - need more support.
The NHS website further explains what hospice care is; https://www.nhs.uk/conditions/end-of-life-care/hospice-care/
Common terms which you may come across
Advance care planning: The process of discussing and recording the type of treatment and care that a patient would or would not wish to receive at a future stage. Sometimes this is referred to as a RESPECT form
DNACPR is an abbreviation of ‘Do Not Attempt Cardiopulmonary Resuscitation’. These advance management plans may be called DNAR orders or Allow Natural Death decisions in some healthcare settings. You may also hear ‘Do Not Resuscitate’ or DNR
Lasting Power of Attorney (LPA): This gives another person the right to make certain decisions on your behalf.
Life-limiting illness is a term used to describe an incurable condition that will shorten a person’s life, though they may continue to live active lives for many years.
Terminal illness is usually used to describe a life-limiting illness that is thought to have progressed to the final or terminal stage.
Ways you can prepare to engage and recruit in the hospice environment
Communication techniques - empathy. If you can, see someone in person rather than over a telephone, ensure simple and clear language are used to explain the study, active listening is paramount and sensitivity to the person’s body language is key.
These patients have been classed in the clinically vulnerable category in COVID-19 terms so have been shielding, sometimes for a while. You need to be aware patients are anxious and hospices are too. Many staff are still doing twice weekly testing and some patients are still seen virtually. Many research protocols have been changed to accommodate remote consents.
Although face to face consent is nice it doesn't always happen. You may find that the consents you undertake are over video call or the telephone.
Below is a video from the West Midlands of a relative speaking of their experience with research.
Further considerations
Conducting research in hospices – particularly independent hospices – can be challenging, as they are often relatively small organisations inexperienced in overcoming barriers to research.
You need to be aware that dramatic changes in the patient’s condition are always possible. They may suffer a dramatic decline or the patient’s condition may be up and down, offering small windows of research opportunity.
You will need to be very flexible in your research as the patient’s comfort/ wellbeing comes first. At the time of a planned visit, they may have suffered symptoms and required medication that may leave them too drowsy/ incapacitated to participate in research. Or they might be having an emotional day struggling to come to terms with things and maybe too upset to participate.
Patients diagnosed with Motor Neurone disease (MND) are classed as at the end of their life but may live for 2 years with the disease so they may use the hospice services for a long time. MND patients need extra consideration - some are unable to write or unable to talk but still have capacity so it can be difficult and complex to manage consents with this population.
Engagement
The following resource is about the Future of Hospice Care and Research, it discusses some key points for why hospices should engage with research, it looks into;
Why is research required in hospice care
What are the barriers to doing research associated with hospice care
What are solutions
Wellbeing and Resilience
Your wellbeing and your resilience is extremely important especially when working in hospice.
Working in palliative care settings is very emotive and can be distressing at times. It’s okay to feel this way – we wouldn’t be human if we didn’t feel upset at times. You will need to seek a network to help you manage any distressing feelings. We recommend looking in to wellbeing and resilience support or if you require further support consider;
Clinical supervision,
Talking therapies,
Spiritual support,
Mindfulness,
Meditation.
REMEMBER working is this type of setting is extremely rewarding
Here are some further resources for you to look at to increase your knowledge and confidence with hospice research
End of life care: research highlights the importance of conversations and need for equal access https://evidence.nihr.ac.uk/collection/end-of-life-care-research-highlights-the-importance-of-conversations-and-need-for-equal-access/
Government drive and support to improve evidence based practice in end of life care. https://www.england.nhs.uk/eolc/what-nhs-england-doing-to-improve-end-of-life-care/
NIHR Resources for hospice research https://www.nihr.ac.uk/documents/list-of-research-active-hospices/12220
There are further resources in the awesome table
This page has been created with the help and support of contributors.
A special thank you to;
Melanie Hands - Research Nurse at the John Eastwood Hospice
Lorna Brown - Clinical Research Nurse at the John Eastwood Hospice