Events

Learn more about palliative care in our live web chat 18 May at noon

There is a lot of talk in the news about palliative care, but many of us don’t quite know what it is or who needs it and when.

Join us Wednesday 18 May at 12.00 for a web chat with Dr Catherine Urch, clinical director, cancer, and senior clinical nurse specialist Randall Spencer-Jones. They will address some common questions and misconceptions about palliative care and answer your questions, too. Healthcare professionals and patients are all welcome to join.

We’ll open the web chat for questions at 11.30, then Dr Urch and Randall will join us at 12.00 to get started. You can join the chat right here on this page, or follow along via Twitter @ImperialNHS. You are also welcome to email your questions to web@imperial.nhs.uk. If you can’t make it to the live chat, check our website later to see the chat in full.

Randall Spencer-Jones: 
Palliative care is an approach that improves the quality of life of patients (and their families) with life-limiting illness, through early identification and impeccable assessment and treatment of pain and other physical, psychosocial and spiritual problems.
 
Randall Spencer-Jones: 
Palliative care is
• not the end of all active treatment
• not confined to the last hours or days of life
• not the withdrawal of food and fluids
• not the ‘default’ position when all else fails
• not hastening death by use of drugs
• not artificially prolonging life

Comment From A girl 
I've heard that some people starve to death with palliative care. Why is that?!?
 
Randall Spencer-Jones: 
That isn't true - no one receiving palliative care 'starves to death.' As people deteriorate from advanced illnesses, it is common for hunger and thirst to decline as the body recognises itself that it is coming to end of its life. People who stop eating die of their illness not starvation. People do not die of dehydration or from lack of fluids – when we give artificial hydration this often causes or worsens problems, rather than solves them. Symptomatically, patients are more aware of a dry mouth, and keeping the mouth moist and comfortable is more important. Hunger is usually absent as death nears, so feeding to prevent hunger is not usually indicated unless the patient desires food, and even then feeding is about the pleasure and taste of food, rather than maintaining nutrition – the body does not benefit from artificial feeding in the last days of life.
 
Randall Spencer-Jones: 
It is good practice to continue to offer a patient food and fluids as they are able to tolerate it.
 
Comment From Guest 
If palliative care isn’t just about pain relief, what else do you do for patients?
 
Randall Spencer-Jones: 
Symptomatic relief in palliative care patients is of utmost importance. This often means offering pain relief. However, some people who have a life-limiting illness may not experience pain. 
We also offer patients and their carers support around emotional issues, complex discharge planning, signposting of financial support, and signposting to other professionals who may be able to assist with any of the above.
 
Comment From Guest 
If palliative care isn't just about end-of-life care, why is it restricted to life-limiting illnesses?
 
Randall Spencer-Jones: 
Palliative care is a speciality that is designed around life-limiting illnesses. Although part of my job is to look after people who are at the end of their lives, palliative care can also be appropriate at any stage of someone's illness, be that a long-term condition or a sudden event.
 
Randall Spencer-Jones: 
Palliative care is designed to help patients who need it at any stage of their life-limiting illness. Some people require palliative care for a short time, and then may return to their normal routine and not require seeing palliative care specialists again for months.
 
Comment From Anon 
When do you decide a patient needs palliative care? What signs and symptoms do you need to see?
 
Randall Spencer-Jones: 
It isn't about recognising a specific set of signs and symptoms, because palliative care may be appropriate for people with a number of different illnesses.
 
Randall Spencer-Jones: 
In our Trust, palliative care is an advisory service. We work closely with treating teams to identify those patients that may be appropriate for our input.
 
Comment From Guest 
What is the difference between palliative care and hospice care?
 
Randall Spencer-Jones: 
Hospices are specialist palliative care units offering inpatient and day unit services. Hospices also tend to a person's comfort and emotional and spiritual well-being, but without the treatments to prolong life or aggressively treat disease when illness is considered non-curable. They are better thought of as a ‘specialist palliative care unit.’
 
Randall Spencer-Jones: 
Although some patients believe they are transferred to a hospice to die, in fact approximately half of the patients admitted to hospices are discharged to their homes or their preferred place of care. Hospices also offer short-term admissions for symptom management and, in some places, respite care. Hospices care for patients with any life-limiting disease, not just cancer.
 
Comment From Guest 
As a palliative care clinician, what gives you the feeling that you've had a good day at work?
 
Randall Spencer-Jones: 
I've had a good day at work if I've been able to make a difference, no matter how small, when someone is going through the most difficult point of their lives. I want to be able to make a difference to the patient, their family and their carers - if I can do that in a day, then it's a very good day.
 
Comment From Anon 
How can I be sure I get palliative care if I get very ill?
 
Randall Spencer-Jones: 
This would involve a discussion between you and your treating team or your GP. If appropriate, they can refer on to specialist palliative care services.
 
Comment From Anon 
My mum is currently coming to the end of her life and receiving care. Its a really emotional time for me and my siblings; is there anywhere we can go to get support?
 
Randall Spencer-Jones: 
I'm very sorry to hear you are going through a difficult time. Part of the palliative care team's role is to sort out emotional support for those caring for a person who are approaching the end of their life. More specialist psychological support services can be accessed within our Trust, or through your GP.
 
Comment From Guest 
Do we over use the fast track tool?
 
Randall Spencer-Jones: 
For those people who don't know what the fast-track tool is: If someone is referred for fast-track continuing care funding and it is agreed, the NHS pays for their placement or package of care rather than social services. For funding to be agreed, there are specific palliative care criteria that a patient must meet. CCGs make the final decision on funding after taking on board the advice from the treating team and palliative care services.
 
Comment From Anon 
My parents are getting older and though they are healthy now, I worry that they will develop life-limiting illness in the coming years. When should I start discussing the possibility of life-limiting illnesses and palliative care with them?
 
Randall Spencer-Jones: 
It is important for all of us to engage in discussions around our preferences for when we become more frail. This is just as important for younger people as it is for older people, as life-limiting illnesses can develop at any age. It is better to have these conversations when someone has the capacity to make decisions rather than leave them to a time when they can appear to be rushed into decision-making or unable to make these decisions for themselves.
 
Randall Spencer-Jones: 
This decision-making process is called Advance Care Planning. It is important that any decisions or wishes are clearly documented and shared with family, GP and any other relevant healthcare professionals. It is a good idea to have these discussions with a healthcare professional because there is specific wording required in documenting what you would or would not want to happen to you.
 
Comment From Guest 
When the patient is under palliative care, do you explain to patient it is end of their lives?
 
Randall Spencer-Jones: 
Even though end of life care is part of our role, we provide care to patients who are not at the end of their lives, as well. Often it is the case that when we are asked to review a patient, some of these discussions about end-of-life care have already commenced. It is part of my role to ensure that patients and their significant others understand the implications of these discussions. On other occasions, patients or their carers may raise this issue themselves and it is important to always be honest when engaging in these discussions.
 
Comment From toots 
Do you think that GP's are having discussions relating to end of life care with patients and family as it feels that patients come in with no understanding of the level of support/care that's needed and the reality of what's actually happening relating to their condition
 
Randall Spencer-Jones: 
End of life care discussions can be difficult for even trained professionals. As stated previously, it is important that any discussions around healthcare are open and honest. People are not able to plan for the future unless they are aware of their true diagnosis and prognosis and they impact that may have on their future care.
 
Randall Spencer-Jones: 
I would recommend visiting www.dyingmatters.org which helps to raise awareness of dying, death and bereavement.
 
Comment From Guest 
Who provides palliative care?
 
Randall Spencer-Jones: 
Everyone! Everyone in the hospital provides some form of palliative care. This can involve us talking to patients, delivering hands-on care, and providing support for relatives. The palliative care team's role is to provide specialist advice to patients, their relatives and treating teams. Treating teams can include doctors, nurses and allied health professionals from any adult speciality in this Trust.
 
Comment From Guest 
How do you personalise palliative care?
 
Randall Spencer-Jones: 
In my opinion, any interaction with the patient is individual. Nationally there is a big push to ensure that all palliative care patients have an individualised care plan specific to their needs and wishes. It could be around symptom control, maintaining autonomy and their preferences for place of care or death.
 
Comment From cla 
can a nurse refer a patient to your team if the treating consultant doesn't think they should ?

Randall Spencer-Jones: 
The specialist palliative care team have a open referral system - that is, anyone can refer to us. Obviously it is good practice to involve or ask the consultant in charge of that patient's care. As previously stated we are an advisory service. We are more than happy to discuss with any professional any patient who they think may be appropriate for our service.
 
Comment From Guest 
If a patient is for ward based care with no further escalation and is in pain, would it be advisable to contact palliative team or pain team?
 
Randall Spencer-Jones: 
If the patient has a life-limiting illness and these discussions have been had within the team and with the patient, it would be totally appropriate to refer the patient to the palliative care team to assist and offer advice on symptom management.
 
Comment From anon 
Do your team have a bed base?
 
Randall Spencer-Jones: 
No, we are an advisory service, and we work closely with the treating teams to ensure the best care for patients regardless of where they are based in hospital.
 
Comment From Anon 
My father was sent home from his terminal cancer (mesothelioma) diagnosis with a booklet on his condition and that was it. When we could no longer cope I had to ring palliative care services at my local hospital directly to request help as no support was provided. What should be the proper procedure to request palliative care?
 
Randall Spencer-Jones: 
We touched on this earlier - if a patient, relative or carer wish to discuss palliative care options, they should speak to their treating team or GP in the first instance.
 
Comment From Guest 
What can I expect when receiving palliative care? What will happen to me?
 
Randall Spencer-Jones: 
This is dependent on you, your wishes and your underlying condition. Dependent on where you are - in hospital or at home - we contact people either face-to-face, by phone or email, depending on your needs.
 
Randall Spencer-Jones: 
The palliative care team would then work closely with your treating team, your GP and other healthcare professionals to ensure you receive quality care.
 
Comment From Guest 
When receiving palliative care will I have regular contact with clinicians?
 
Comment From neeqs 
is your service for any age or just over 18?
 
Randall Spencer-Jones: 
You may have regular contact with clinicians while receiving palliative care, but this is dependent on your condition and the discussions you have between you and your palliative care specialist.
 
Randall Spencer-Jones: 
At our Trust, our palliative care team works with adults, aged 18 and over.
 
Comment From Guest 
do you think we are good at challenging teams when we can see that palliative care involvement is needed despite the resistance from teams?
 
Randall Spencer-Jones: 
It is always good practice to advocate the best care for your patients. Often consultants leading on a patient's care have valid reasons for not wishing to involve our team. We are, however, more than happy to discuss any concerns with any healthcare professional.
 
Comment From Guest 
What is the difference between a Macmillan Nurse and a Palliative Care Nurse?
 
Randall Spencer-Jones: 
Macmillan Cancer Support is a charity that funds a variety of posts at our Trust and they have had close involvement with our Trust, especially in improving the experience of patients with cancer. Palliative care and site-specific cancer posts are not necessarily Macmillan-funded roles.
 
Comment From csj 
I am working with a client who I know needs input from the team but is refusing and is able to make that decesion
 
Randall Spencer-Jones: 
As with any decisions from a capacitous patient, we must respect their wishes.
 
Comment From csj 
what can make us better at providing great care end of life to our patients ?
 
Randall Spencer-Jones: 
As a Trust we should always be striving to improve the care we deliver. There are many instances of excellent end-of-life care throughout the Trust, but there are also some areas where we could be doing better. Some areas for improvement recognised by the recent National End of Life Audit-Hospitals include communication with patients and relatives, decision-making and communication around Do Not Attempt Cardio-Pulmonary Resusciation (DNACPR) forms, and documentation about nutrition and hydration in end-of-life patients. We are already making headway in looking at improvements in these areas.
 
Comment From Guest 
This is very informative, thanks for the insight
 
Randall Spencer-Jones: 
Thank you very much, I'm happy to be here!
 
Comment From Guest 
Are the team made up of all different members of the MDT or is the team nurse/Dr lead?
 
Randall Spencer-Jones: 
Although staffing within the palliative care team consists of doctors, specialist nurses and administration staff, we consider ourselves to be part of the wider MDT ensuring that we can deliver high-standard care to all of our patients.
 
Comment From mauri lad 
is the services 7 days a week or an on call services I can refer to?
 
Randall Spencer-Jones: 
Currently the team provides a Monday through Friday, 9-5, face-to-face service. If there are any specialist palliative care concerns out of hours or at weekends, the palliative medicine consultant on call can be contacted via switchboard.
 
Comment From Guest 
do the team have a practice educator that supports nurses on the ward?
 
Randall Spencer-Jones: 
All practice educators on the ward are able to offer insight into palliative care or contact us where necessary to be involved in educational sessions. The team is exploring the possibility of developing an education faculty around end-of-life care. If anyone at the Trust is interested in joining this, please contact us via our email: palliativecare@imperial.nhs.uk.

Comment From n17 
Do you feel that the assumption is made that patients should be discharged to an end of life placement or do you feel that the option is given for discharge home despite how high the patients needs are?
 
Randall Spencer-Jones: 
We would strive to support meeting a patient's preferred place of discharge at end of life. If this is home, we ensure that patients and carers are fully aware of the community resources available so that they are able to make an informed decision.
 
Comment From ward nurse 
I have great responses from the team whenever we refer patients and just wanted to provide feedback to all the team
 
Randall Spencer-Jones: 
Thank you very much, I am delighted to hear that!
 
Randall Spencer-Jones: 
Thanks for participating everyone! Unfortunately Randall has to go, but we really enjoyed this chat. All the best to everyone who took part!