When you are caring for a loved one, the different terminology and phrases you hear can be confusing, especially if you don’t have a medical background or have never had to deal with this type of situation in the past.
The two terms, “palliative care” and “end of life care” are one such case. They are often used closely but do have two separate meanings. It is important to understand the crucial differences between them, especially if you are in a situation where either type of care needs to be delivered.
In simple terms, Palliative Care is a collective term for care given to terminally ill patients (and their families), to ensure they have the optimum quality of life whilst receiving the best care possible to keep them comfortable and still engaged in the world around them.
End of Life care, however, focuses literally on the end of the patient’s life – typically the final 6 months to a year. It is a portion of palliative care but focuses primarily on the final days and affairs that need to be sorted, as well as ensuring the patient dies with dignity.
In more detail, palliative care involves all dimensions of a terminally ill patient’s life, from their psychological needs to physical, emotional and spiritual. These are all considered, as well any goals the patient has such as a bucket list, seeing relatives, legal matters and so on. Symptom management is also key, as the end goal is for the patient to remain as engaged in their life as possible whilst being aware that their illness will not get better.
Palliative care typically begins at home but will be adapted to circumstances as they change. However, the goal of palliative care is to keep the individual able to carry on with their daily lives as much as possible for as long as possible, so will include treatment and management of pain, emotional distress, insomnia, loss of appetite and any other symptom that causes the patient to be suffering.
It is important that both patients and carers who discuss palliative care understand the difference between this and end of life care, as those with palliative care plans may still have many years before an end of life care plan needs to be put into place.
End of Life Care
As above, end of life care (which is sometimes also known as Advance Care Planning) focuses more on the final days. Most patients in this situation are given a shorter timeframe to live and as such know that there are legal issues that must be resolved as well as continuing to ensure quality of life. End of life patients must also be allowed to die with dignity and care plans will be set in the place to achieve this.
End of life care can take place at home, in a care home, in hospital or in a hospice depending on individual circumstances. One of the key areas of end of life care is talking with the patient where possible to determine their feelings and wishes. An end of life care plan will take these into account. Talking with the patient will also help them to come to terms with their illness, helping to prepare them for what may happen both physically and emotionally as their illness becomes prevalent.
Legal affairs surrounding end of life care include:
- Lasting power of attorney
- Do Not Resuscitate orders (DNR)
- Advance decision to refuse treatment
- Making a will
Please remember that both palliative care and end of life care plans are not just for the patient, they also work to ensure the family are supported and kept updated as things change.