Understanding Palliative Care for Young Adults
I am a specialist in adult palliative medicine and a member of the hospice palliative care team at Jacksplace, the hospice for young adults. My role is to support life limited and life threatened young adults who have complex health care needs.
As a doctor, I am there to help my patients with managing the symptoms of their condition and to help them plan for their future. My role has different meanings for the people we care for, but for many of the young adults who use Jacksplace, it provides an opportunity to help build trust. It means that when they are approaching the end of their life and we need to have some very difficult conversations, I’ve already got a relationship with them. They know they can trust what I’m saying and be confident that I’m being open and honest with them.
What is palliative care?
The term ‘palliative care’ can be misunderstood, but to clarify, palliative care is for people who have a life limiting diagnosis and it aims to support them and their families through their illness. It involves managing the physical symptoms, the psychological impact of that illness, planning for the future, care through the actual dying process and providing support to the wider family.
Palliative care is not only about end of life care, it is about helping people to live well and achieve their goals, to plan for the future, so that when they are dying, they are cared for in the way that they wish.
Primarily, palliative care is there to help people live as well as they can for as long as they can. Whilst acknowledging that we are all going to die and we should all be planning for that, for some people planning for the care they want to receive is more pressing.
Making space for conversations
We may have to have conversations with the young adults which are not easy, for example, to discuss whether they would wish to be resuscitated or go to intensive care in hospital if they become very ill. The young adults will know that as they come to the end of their life they will have to go somewhere for care, and because they are familiar with our nursing staff and with me, Jacksplace may feel like a more comfortable place to be. Many of the young adults are worried about what is happening to them, but they are also very worried about their partner or their parents, and how they are going to be after they have died. We can reassure them that we will also support their loved ones at such a difficult time.
Jacksplace is our hospice for young adults and is open 24 hours a day seven days a week. One of the differences between Jacksplace and other adult hospices is that because of the respite stays that we offer, we will see people throughout their journey, giving me the opportunity to build a relationship with many of the young adults over a long time.
Connor was a regular visitor to Jacksplace, and I was able to get to know him over many years before he died. He told me that it was his wish to die at home, however, when he became seriously ill, I had to explain to him that this wasn’t possible as his medical needs couldn’t be met at home. If he didn’t want to go to hospital, then Jacksplace would be the best place for him. Because we had built up the trust between us, he understood and accepted what I was saying.
You can read Connor’s story here.
I am an adult palliative care doctor with a background in paediatrics, making me familiar with the health conditions young adults at Jacksplace face — conditions that may be less familiar to doctors who specialise only in adult care. I can be a point of expertise and experience for other medical professionals.
Amanda provides invaluable and expert guidance for us as we care for young adult patients, and those transitioning from paediatric to adult services. Many of these people have complex conditions that differ from those usually seen in adult palliative care. Amanda’s approachability and in-depth yet pragmatic knowledge is a huge support to our team and helps us to continue to provide the best care for these patients in the place they want to be cared for.
Working in partnership with the NHS and adult hospices
I have a split site role between Jacksplace and University Hospital Southampton (UHS). The flexibility of working for both means that I can see people at home, in hospital and also during their stays at Jacksplace. I can admit them to Jacksplace if they need to come in for symptom control or because they are dying and they need end of life care.
At Jacksplace we look after young adults with complex health needs during their respite stays, for symptom control, and for care whilst dying. We are also uniquely placed to be a bridging role in helping young adults navigate the transition from paediatric to adult services. We know the people who are making the move from Naomi House, our hospice for children, and are approaching adulthood, and there is an established and supportive process for making that transition.
Although we can’t accompany every young adult to every appointment, if there is someone who has a complex need, we will go to their specialty clinic appointments to help facilitate transition. It is not always specialist palliative care that is needed, but with our specialist knowledge, we can be their advocates in what can sometimes be a very complex situation.
Where I meet a young adult on their journey very much depends on their individual circumstances. Some people have transitioned from Naomi House, and we have known them for a long time. They may come for respite and not have had any specialist palliative care needs at that time, and I might only have met them briefly, but I make a point of meeting all of the young adults at some point. Some people will be brought to my attention as having pain or a symptom they need help with and with others, I will have discussions about advanced care planning.
When I am working in the hospital, the consultants there will make me aware of people who Jacksplace will be appropriate for and who aren’t already using our services. They could come through the teenager and young adult cancer care service, the cystic fibrosis service or the congenital heart disease service. I work alongside Harriet, our Clinical Nurse Specialist in Adult Palliative Care, and together we will go and meet young adults in hospital and if we think it is appropriate, we will introduce the idea of Jacksplace to them.
My role is jointly funded by Naomi House & Jacksplace and University Hospital Southampton (UHS) and is an example of working in partnership with other care providers. There is a great deal of overlap between the two roles. When I’m at UHS I work in the palliative care team and will be available for the young adults who need me. If someone I know from Jacksplace is in hospital, I will make sure that I can see them while I am there.
It’s important that the patient gets the best service for them, and we are very keen to collaborate with other healthcare providers to ensure that this happens. If somebody has expressed a wish to die at home, we can share the care with Mountbatten Hospice who have a 24/7 community service. We will arrange joint visits and share information so that the families can get the best care that is available to them.
Joseph was a young man who had been supported by Naomi House & Jacksplace for many years but so far hadn’t had any particular specialist palliative care needs. Sadly, he had caught Covid and was admitted to the adult ward in hospital. I was able to spend time with him whilst he was there and over a period of time I got to know him and his family. It became clear to me that the young man was reaching the end of his life. Having the time to get to know him and his family in hospital meant that I was able to have the necessary conversations with them about the next steps.
Joseph was able to leave hospital and Harriet and I were able to visit him at home, linking in with his GP. He even came to Jacksplace for some respite. However, when his needs escalated and he and his family wanted him to stay at home, we referred to Mountbatten Hospice. We arranged an initial joint visit and then visited separately but kept in regular communication. We shared his care and were able to support the team from Mountbatten with some of his medical needs. Between us we were able to ensure that the young man was able to die at home, as he wished.
Without the support of the Naomi House & Jacksplace team we would have been lost. The knowledge, compassion, attention to detail and care for us as a family was unending. Even now it continues in such a caring and open way.
In my role at the hospital, I often don’t have much time to build a relationship with my patients. It could be that a patient who has cancer is made known to me and they may only have weeks to live. I would see them for a symptom review or to discuss advanced care planning, but we would need to build the relationship more quickly.
Working at Jacksplace means I have more time to build trust and have deeper conversations. This is such a privilege, even though it can be emotionally very hard on me because I get to know the families and have a relationship with them.
Helping people manage their symptoms
With any health condition, such as cancer, cerebral palsy or neuromuscular conditions, there are symptoms that occur because of that condition, for example, pain, nausea or vomiting. From a palliative care perspective, there may be symptoms that you can cure but often there aren’t, they are a result of that disease and rather than trying to treat the underlying disease, we try to focus on managing those symptoms. This isn’t always by medication; it might be by using other strategies. For breathlessness, it could be about teaching people breathing techniques and coping strategies. It is very important to make the symptoms more manageable so that people can live life and do the things they want to do.
The specialist palliative care we provide involves trying to manage patients’ pain and effects of their health condition as much as possible. They might not be completely symptom free but enough that they can do the things that matter to them.
Although we are not care coordinators, much of the Jacksplace role involves trying to help some of the young people navigate the new world they find themselves in as adults with a complex condition and possibly a complex set of symptoms.
As well as helping people manage their medical symptoms, we can help access additional care through social services. They might need to produce medical evidence to show why they need more care, or they might need us to go with them to other appointments to advocate for them. It might be that a young adult needs their parent to stay with them in hospital because they provide a lot of their care, which the nursing team are unable to replicate. We can help with these conversations.
Our roles involve a great deal of advocacy and supporting young adults in making decisions regarding their care. Jacksplace is unique in this area. Some of the young adults we support may have a learning disability or have learning needs, but we need to ensure that they have their choices recognised and support their families in looking after them.
It is a privilege to be able to spend time with young adults and their families, and they know they can trust me when they are facing the most difficult time in their lives.