A guest blog from Dr Yakup Kilic on an important topic close to the hearts of many of us.
What?
We have high expectations of our medical professionals to find cures or treatments for common conditions. For simple things like stomach bugs or chest infections, we know that if we go to hospital the doctor will know how to cure us. However, we rarely talk about situations where there are no longer options to reverse the disease process, or the condition has become an entity that cannot be cured and reached a terminal stage. The prospect of death may not be imminent, and this opens the door to the idea of living with a terminal condition, with minimal symptoms, for as long as possible.
Palliative care is not ‘end-of-life’ medicine. We associate palliative care with very sick and dying patients, often with life expectancies of a few days or weeks. Equally, we think of hospices as places of death, however warm and caring they may be. But for many patients, hospices can be a place of rebirth.
Palliative care is the medical specialty concerned with removing or easing the symptom burden patients face through medical conditions as diverse as cancer, COPD or motor neurone disease, to name but a few. It centres around providing physical relief from symptoms, but also providing psychological, social and spiritual support to patients and their loved ones.
Why?
Clinicians are healers first and foremost, and the central mission of medicine is to relieve the body of sickness and disease. Often when faced with an immovable or incurable illness, the first conversations around goals of care and appropriate treatment decisions can be difficult. These conversations are long and complex, carrying significant emotional weight and with potential care decisions often in opposition to a patient’s personal or religious beliefs.
This complexity is compounded by the fact that some clinicians may feel uncomfortable having these conversations. This is due to a number of challenges such as inadequate training or experience, time constraints, and challenges predicting prognosis. Palliative care encompasses all of these aspects, not just the withdrawal of treatment or end-of-life.
How (does it affect you)?
The sum of all these barriers can lead to specialist palliative care services being underused in the NHS and typically erroneously relegated to end-of-life care.
If you or a loved one has an incurable disease with a high symptom burden such as pain, breathlessness or nausea, think of enquiring about palliative care. Many of these problems can be avoided or lessened if concepts such as understanding of the disease and goals of care are introduced early in the disease process.
Then, as the disease progresses, specialist palliative care services can be introduced to patients and their families. It’s also important to consider advanced care planning, where patients make early decisions on questions such as where they would like to spend their last few days to weeks of life, or what level of intervention would be appropriate to avoid unnecessary pain and more hospital admissions.
Patients may choose to spend their final days at home, or in a hospice. Interventions such as invasive endoscopies, CPR or having a breathing tube in the intensive care unit may be seen as inappropriate to some patients. Palliative care services can help to make these decisions without prejudice, and without agenda.
Here are a few key words you may hear in hospitals that are related to palliative care:
| Prognosis | An individualised estimate for patients to help them understand their disease status and outlook while acknowledging the unpredictable nature of the disease. |
| Clinicians should engage with patients and their families in shared decision-making by using open-ended questions to explore patient understanding, and their desired outcomes. | |
| Advanced care planning | Clinicians should discuss goals of care and appropriate treatments based on those goals early in the disease process and re-evaluate these goals over time as the patient’s disease progresses. |
| Palliation not withdrawal | Clinicians should effectively communicate with patients and their families that palliative care provides holistic person-centred care aimed at improving quality of life. It is not withdrawal of treatment. |
| Hospice | Similar to a hospital, but with fewer beds, and dedicated to palliative care. Patients may attend for:
– a day care basis for group activities All patients will usually have a life-limiting disease, but not all patients will be imminently nearing the end of their life. |
If you’d like to read more about palliative care, here are some useful links:
What is palliative care? Excellent answers from Marie Curie and Get Palliative Care.
As always, best wishes from myHSN!
