Changing the way we think about palliative care

looksee wrote: »

Hi Loop Zoop. Can I throw a question at you (or of course anyone else who is reading) about palliative care specifically in Ireland? My understanding of palliative care (and I really don't know much, if anything, about it) is that it is care that will make a patient comfortable in an end of life situation. Care that may supersede treatment for the illness as the condition worsens and treatment is not going to produce a recovery.

How is it decided when palliative care is appropriate, who provides it and how is it accessed? I think cancer patients are in a loop that already brings in palliative care when necessary; for non-cancer terminal patients, how is the need assessed and who should be approached?

Hi looksee

Your first question is best addressed by clarifying exactly what palliative care is.
The WHO define it as follows:


"Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
Palliative care:

-provides relief from pain and other distressing symptoms;
affirms life and regards dying as a normal process;

-intends neither to hasten or postpone death;

-integrates the psychological and spiritual aspects of patient care;

-offers a support system to help patients live as actively as possible until death;

-offers a support system to help the family cope during the patients illness and in their own bereavement;

-uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;

-will enhance quality of life, and may also positively influence the course of illness;
is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications."

The last point is of particular relevance to what you describe as your understanding (and is the understanding of many/most people). Palliative care doesn't automatically mean that active treatment is finished and there are no further curative options for the person. In an ideal world, if more people understood that they can concurrently receive palliative care and active disease treatment/management it would (I hope) lead to a much greater acceptance of what we can offer and therefore much greater levels of comfort and relief from distressing symptoms caused either by their disease or its treatment.

Unfortunately, many people are hesitant to accept palliative care input at an early stage of their illness because they believe that it means they're giving up/can't have more treatment/are about to die.

End of life care is part of palliative care but not it's sole aim. Specialist palliative care practitioners are skilled in recognition of when it is appropriate to initiate conversations and planning regarding EoLC and won't do so at an early stage if it's not wanted or needed by the patient or their family at that time. Sometimes the palliative team will identify that the person has become less well as would be expected given the stage/phase of their illness and they might advise the person or their family to consider whether further treatment would be beneficial versus burdensome or might actually hasten death. They will never make the decision to stop the patients treatment in isolation however. That decision is only made in consultation with all members of the multidisciplinary team (ie Treating consultant, GP etc)

Sometimes it is appropriate for specialist palliative care practitioners to recommend palliative treatment, where the aim is not to cure the disease but to palliate or relieve a symptom. The best example I can provide off the top of my head would be palliative radiotherapy (eg for pain or breathlessness for a patient with lung cancer)

Regarding access to palliative care: all you need is an address and a GP. The decision to refer a person to palliative services can be made by anyone- a treating consultant or their nurse specialist, a GP or public health nurse. Usually it's the doctor who completes the referral form. It's processed and the appropriate service (ie the palliative team in acute hospital/specialist in-patient unit/community/day service) is notified. It's the same route for all patients, regardless of their disease being malignant (cancer) or not. Not all cancer patients are automatically linked in with specialist palliative services but you're correct in thinking that they would have more ready access than perhaps someone with dementia/copd/heart failure/kidney failure.