Yesterday I was fortunate to be able to attend this years Palliative care conference at the Benjamin Gooch Theatre at the Norfolk and Norwich Hospital. The varied an interesting programme of speakers and their topics created interesting debate and sharing of information. Not only is this event a fantastic opportunity for doctors to sit along side nurses, care home workers, community nurses, palliative care specialists and the likes of myself, and debate what was presented, but it is an important day that acknowledges the dedication that those in the palliative care sector really have about what they are doing, and to witness the genuine passion they have to do the best for their patients and their families.
The first speaker was Dr Caroline Barry, a registrar in palliative medicine at the NNCH.
Mental capacity – To Treat or Not to Treat?
Dr Catherine’s lecture brought to light the difficult decision making that is so often present in Palliative care. She gave us scenarios to debate which helped us to understand the legal implications of the difficulties of decision making, when trying to meet patient wishes and family expectation. When does medical intervention become futile or burdensome for the patient? How does one best deliver difficult news? What Caroline did make clear, was that decisions made about patients were not just down to the Doctors, it became a wider team decision. When a patient enters end of life phase, they are encouraged to write an advanced care plan which states all patients desires and wishes including, resuscitation, power of attorney, etc, should disease progress to a point where one is unable to make decisions. Catherine’s lecture was thought provoking and informative, reiterating the need for transparency, honesty and clear communication when making difficult decisions about a patient.
Next in the programme was a talk by Stephanie Barker- she has worked in palliative care for 40 years and now works as a family therapist at the Big C center, and with private clients.
The Impact of Serious Illness on Families
Stephanie’s lecture was frank and empathetic, shining a torch on the hardship and implications that diagnosis has on the family. She talked of the broad impact and strain that illness has on key family members, and how best to support the needs of those who are caring for their loved ones who are sick. When patients and their families are referred to Stephanie, she opens up and encourages dialogue to find out how best to support them and is gifted and experienced at working with children. When she started to talk about children, it was particularly difficult in view of the Manchester attack, and a minutes silence was observed during the talk in remembrance off all those who died and have been affected by such unnecessary loss.
After tea brake we heard from Dr Nicola Holton- Chairman and consultant in palliative Medicine, NNUH.
Symptom Control at the End of Life
Dr Nicola Holton is a key influence for the development of palliative care in Norfolk. Her expertise and specialist knowledge are central to the specialist care and individual treatment that each patient receives at the NNHU. In her talk she discussed ways to maximize the comfort and well being of patients and described pointers that help recognize when a patient will need to make and advanced care plan. Nicola highlighted how to start conversations around dying, when a patient might die, and how to prepare for it. She illustrated ways if dosing medication in syringe drivers for different conditions such as Renal impairment, liver failure and heart failure. This part of the lecture was useful to community nurses and care home staff. Helping them to work out quantities and the mix of medication for particular situations and pain levels. She introduced two case studies and initiated discussions that explored the particular needs of patients and their families. She gave details of out of hours service and discussed ways in which the service can improve.
Our next speakers were Beccy Cooper – Assistant director for palliative care, NCH&C and she brought with her Jane Shutter who gave the voice of the service user.
Collaborative Approach to Palliative Care in Norfolk
In the first part of her talk Beccy set out the 5 year plan and ambitions for palliative care spreading out across Norfolk and Waveney. She is very strong on the need for a collaboration approach between areas and services, so that patients don’t slip through the net. Beccy is in the process of building a compassionate community that has the needs of services users and their families at it’s center. She recognizes in the future that the need of palliative care services will increase, and wants the services to be able to respond adequately to those using it. This may include helping patients leave hospital quicker so they can die in their own home, reducing avoidable admissions to acute care, reducing hospital length of stay. Beccy’s holistic view of the service will be translated into the new plans for PBL2 which are currently in development stage. Her vision for a collaborative service between, GP’s, consultants, doctors, community nursing, hospice care and a home palliative care services will hopefully come to fruition through the new state of the art hospice which will be situated at NNHU. We then heard from Jane shutter a brave woman who cared for her father during his terminal illness. She spoke very frankly about her frustration at the lack of communication and honesty of the services providers and highlighted very eloquently where the gaps were. Being her fathers only carer was a great strain emotionally and physically, and she, without blame or accusation tried to forfill her fathers wishes to retain his dignity and to die at home. But she found very little support from the community nurses who’s role and service has been stripped bare. She described how getting medication and managing hers fathers pain levels were an enormous burden as nurses didn’t have the time for compassion, or sometimes the information to be able to help her. She is a dear person who loved her dad. Jane was very grateful and appreciative of the appropriate support she did receive, but her truthful account means that Beccy and others in higher authority can respond to Jane’s experience with empathy, and do their level best to close the gaps in the services that Jane high-lighted. what a moving and informative talk!
After lunch we heard from Dr Ajay Kamath, Consultant Physician in Respiratory medicine,NNUH.
Respiratory Perspective on End of Life Care
Dr Ajay began his talk with a quote from Hippocrates “cure sometimes, treat often, comfort always” What I understood from his talk is that it is difficult to be a Doctor when a patient cannot be cured. When you have to give someone the “Bad News” you only have a small amount of time to do it in. As a Doctor you cannot heal the condition, you have to learn how to manage the condition and the emotions that arrive as a result. You cannot fix the situation, and you know that the only changes will be a gradual decline of the patient. With respiratory conditions there a is has a very low survival rate and anxiety and depression are often present in the patient. So as a Doctor, Ajay recognized that he needed to improve his palliative care skill ie, when to recognize that treatment is futile and a burden on the patient, and start to collaborate earlier with the palliative care team. This collaboration he sighted as an important and vital part of giving patients with respiratory short life span diagnosis the best possible quality of life until they die.
The next speaker was a good link into what Dr Ajay’s talk…
Anna Farrar- Hospital Specialist palliative care nurse.NNUH
“breathlessness is about the brain more than the lungs”
Anna described how not being able to breath is very frightening. It’s our most fundamental need. The fear and panic of not being able to breath can be debilitating, and it is useful for those who suffer with breathlessness to have a strategies to over come the panic and find their breath again. She described breathing techniques and encouraged the use of a hand fan on the face, as cold facial stimulation reduces breathlessness. She teaches her patients both those with good and terminal prognosis the recovery breathing technique and explores their fears so as to make a physiological link to their breathlessness and being able to cope with it. Having the ability to cope with breathlessness attacks means that the patient is liberated from fear, thus improving quality of life for both them and their family.
As a Bowen therapist and training Soul Midwife this conference gives me an invaluable insight into the medical side of palliative care and the chance to meet those on the front line of palliative care and have interesting debate and discussion.