Palliative care services
Palliative care ensures that all aspects of life are cared for – from coping with physical symptoms to emotional and social support for you and your family; from advice about your finances to help with ramp applications to enable a wheelchair to be used at home.
Palliative care can provide a sense of community and camaraderie with other patients, and may include:
- benefits and entitlement advisors
- counselling
- medical advice
- medication reviews
- specialist breathlessness management services
- legal advice
- physiotherapy
- complimentary therapy
- spiritual support
- social activities
- social workers
- support groups
As part of your palliative care, you can also get help with having difficult conversations with family and friends. They also provide diagnosis adjustment support for children and adults, and bereavement support.
The palliative care team
The palliative care team often includes dieticians, nurses, doctors, and therapists. They work closely with the respiratory clinical team making sure you continue to get any lung disease treatments that would benefit you.
Where you can have palliative care
You don’t have to be in healthcare facility to receive palliative care if you don’t want to. You can get help at home; as well as in hospital, in a care or nursing home or in a hospice.
At home, you might get help with symptom management as well as advice on having equipment such as a hospital bed or a stool in your shower installed.
Hospices sometimes offer a day facility where you can join music, art, gardening or book clubs as well as access specialist medical advice. Carers can benefit too, for example by enjoying alternative therapies such as reflexology.
You can also have short-term inpatient care to get support for difficult symptoms.
When to ask for palliative care
Although palliative care is sometimes associated with end-of-life, you can benefit from palliative care at any time. The aim is to live as well and active as possible for as long as possible.
People can access specialist palliative care services for problems as they arise, and then be discharged as they resolve.
Talk to your medical team about a referral to a hospice. You can also check with your local hospice as many accept referrals from carers and patients for some of their services or contact Marie Curie.
End-of-life care
As you near the end of your life, palliative care can help you to live as comfortably as possible in the time you have left. It involves managing physical symptoms and getting emotional support for you and your family and friends.
I feel better informed about the help available, and energised by taking some time for myself.
Most importantly, spending time at the hospice has helped me understand that they offer supportive care for your entire journey, not just the final moments.
I would encourage everyone to engage with a local hospice, at whatever stage of illness, if only to find out what support is available along the way.” [Clare, IPF patient]
Information provided by Action for Pulmonary Fibrosis (APF) is not a substitute for professional medical advice. It’s intended as general information only. APF is not responsible for any errors or omissions or for any loss or damage suffered by users resulting from the information published on actionpf.org.