“Palliative care is about living as well as possible, for as long as possible.”

John Sheridan has worked in the NHS for 23 years, starting as an A&E receptionist. Now Macmillan Lead Nurse for End of Life Care within Specialist Palliative Care at North Tees & Hartlepool NHS Foundation Trust, John reflects on how essential his role is, especially for those with a cancer diagnosis.

While we increasingly see an improvement in the diagnosis, treatment and survival rates in patients with cancer, there are times when there is no cure for a patient’s disease and we must adopt a palliative approach to the care we deliver. Palliative care is often misconstrued as limiting or withdrawing treatments; a stark contrast to the actual truth. Palliative care is supporting people to live as well as possible, for as long as possible. It often focuses on what is important to the patient and their loved ones, with an emphasis on achieving those things. Supporting a patient and those close to them, creating opportunities to plan their wishes and their care in advance is often the most important thing we can do when people have a life-limiting illness. It’s not about giving up hope – if anything it’s an opportunity to ensure yours or your loved one’s care is planned in partnership with your care teams; your GP, district nursing Team, hospital care team or carers. Sadly, we often miss opportunities in planning this care – due to a reluctance to want to discuss palliative or end of life care and that’s why it’s so important that we highlight this on World Cancer Day.                                                                                                                   

Like most people, my life has been touched by cancer. While I have family and friends who are survivors of their cancer diagnosis – thanks to early diagnosis, rapid assessment and treatment – I have also experienced the sadness and loss of those who died because of the disease. In my early 20s I watched those close to me receive palliative and end of life care, not knowing what it all meant. The experiences of losing friends and loved ones, some but not all of them to cancer, has had a profound influence on my life and career. It also made me appreciate how important knowledge and perception of palliative and end of life care is amongst professionals, patients and the wider public.                                                                                                                                                                                                                                

Being able to encourage or support patients who have a palliative or life limiting illness to plan their future care is something I am passionate about. There’s only one chance to get it right and empowering staff to create and adopt a culture of delivering excellent end of life care while including patients and their loved ones shows that trust, compassion and patient-centredness is instrumental to how we shape the individualised care we give. It’s important to recognise that patients and families can be at their most vulnerable, emotional and fearful and the importance of compassionate, person-centred care being supported by effective compassionate communication and guidance from the teams delivering that care is immensely important.                                                                              

Patients and their loved ones can instigate Advance Care Planning with their health professionals at any time. Some of the key issues to consider are:

  • Time: Often the things that make a patient unique are those things we need to know about as they become more unwell. Health professionals should encourage patients to discuss what treatments they wish to consider, where they want to be cared for and what they hold dear to them in a spiritual sense
  • Personalised care: A person’s preference is important in how we plan care. Sometimes it’s the less obvious things that are important to them; ‘I’d like to have my dog visit me one last time’ is something we often hear. This is easily achieved and has brought a smile and a tear to patients who often thought they would never see their beloved pet again                                                                                                                        
  • Humility: People are at their most vulnerable; the patients given life-changing information on a ward or in clinic, the family members sit at their bedside for hours on end, the student medic or nurse caring for a patient who is dying – the human touch is often the thing that is remembered. Asking ‘is everything ok – can I do anything for you?’ whether it’s to patients, relatives or colleagues when in a situation where somebody is approaching the end of their life is often comforting
  • Documenting and information: Depending on where you are, there will be documents that support Advance Care Planning, decisions around treatment and Emergency Health Care Plans for Anticipated emergencies. They help to ensure the palliative care that is received at the end of life is planned for and shared between all professionals who may be supporting care. Asking your hospital team or community nursing team about this information is often a good start
  • Support and guidance: I would tell Macmillan and other health professionals to encourage patients to utilise the Macmillan website for further information and guidance. There are documents that can support patents and their families in planning for the future but also lots of information that can answer some of the questions people often are too afraid to ask

As a nurse leader, I promote, enable and empower clinicians and teams to champion and deliver excellent end of life care for patients. We’re always on the periphery of life-changing decisions, treatments or planning. But it’s essential to understand that to the individual you are dealing with this is their journey, their family and their end of life.                                                        

  • Be the professional that you would want to care for you as a patient – offer them support, kindness and humility
  • Empower them to do and be what they want through shared planning
  • Identify what is important to them and where they want to be and share and support with colleagues that can help achieve it
  • Don’t wait ‘til it’s too late! making sure a patient who is palliative or approaching the end of their life is known to the District Nursing Team, GP Palliative Care Register and if there are complex symptoms or psychological distress or you need support as a professional, seeking early support from your local Specialist Palliative Care Team early is essential
  • It’s ok to ask: Ask yourself ‘Would I be surprised if the patient died in the coming 12 months?’ If it’s a possibility, they should be supported with a palliative care approach. If in doubt, discuss with your local Specialist Palliative Care Team

When we get end of life care right, the patient’s families and loved ones always remember us; when we get it wrong, they never forgive us.

6 replies on ““Palliative care is about living as well as possible, for as long as possible.””

  • A brilliant read!!! Dispelling the myths of palliative care, I lost both my parents to cancer and have felt bitterly disappointed with the care both my parents received but they both died weeks after diagnosis, I’m guessing their care would of been different had their illnesses been diagnosed earlier.

    Angela Hebb
  • I wish, my step-father’s last weeks and death were impoverished by the care that he received, his diagnosis was treated/cared for, not him. He was so distressed about not being heard/listened to.

  • I was diagnosed with terminal metastatic prostate cancer in May of 2016 and had a prognosis of up to four years and more recently to the end of 2017. I’m still here and that’s because of my amazing wife’s support and the assistance of so many clinical and palliative care staff, who have helped us deliver our dream of living as normally as possible for as long as possible and making every day count. We go out for cooked breakfasts or evening meals as often as we want to and the team help us with removing obstacles like nausea or bowel problems.
    People often talk of “bucket lists” as though there has to be a collection of very materialistic things (a new car, a new piece of home technology, an exotic holiday) which you rush and try to get when you’re dying. That really isn’t my or our experience. It is that you want to enhance every day to bring the best out of you and give that better you to those around you.
    It is a privilege to be given notice of dying, which allows you to put your affairs in order and leave your other half as well set up as possible and planning together things like your funeral. That is such a contrast with the 40%+ of people who die suddenly and leave their affairs in a total mess. Like my father, who dropped dead at 64 in the High Street and left not a Will nor anything to help my mother through the chaos of his life, because absolutely everything was in his name. She never even knew what his salary was, for example, because he always gave her weekly “housekeeping” in cash and the rest was his. Needless to say, the housekeeping value didn’t change year on year!
    We have had the most wonderful support from staff in helping us realise our vision of time spent as well and as fully as possible. Thanks you so much!

    Kevin McAleese
  • Well written and it is so tru, if end of life/palliative is got wrong ,it’s a hard thing for family to forgive, but good care is remembered. It is a mighty privilege to walk with a person and family in the final part of their life journey, and they deserve the best connection we can make with them , the most compassion we can muster, and it’s no time to give impoverished care. DHBs need to wake up to this, and fund the staff numbers . required. We only die once and we want it to be as comfortable,peaceful and feel as loved as possible

    Hilary Arnold
  • very nice to read ur comments/for paitents who need palliative care

    susan prest ward 25
  • My mother got the best possible care there during her last two weeks of life .all of her family can’t say enough to all who cared for her ,we appreciate everything your very well trained staff did to make her last days as good as they were thank everyone so much especially the Drs and nurses and everyone who helped no matter how big or small as everyone of you amazing people got us all through it . God bless you all you are very special people .Thanks so much from all her family .

    Rosemary Farrell

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