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15-03-2016, 17:16   #1
Cornelius Crow
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Changing the way we think about palliative care

I thought this could be a nice topic to open some discussion in our brand shiny new forum

The article below is brief and contains links to a UK report called Triggers for Palliative Care.

https://www.mariecurie.org.uk/blog/c...ive-care/48682

Basically it describes where palliative came from and what it offers now for people with a terminal illness.

While it isn't an Irish report, in my anecdotal experience as a provider of palliative care I believe that the same themes arise time and time again for people living with terminal illness: the belief that palliative care is synonymous with end of life care/giving up, that it's just for cancer patients, it can only delivered in a hospice etc.

would anybody like to discuss their experiences?

Last edited by Cornelius Crow; 15-03-2016 at 18:22. Reason: Referenced a report not a study
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16-03-2016, 08:55   #2
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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?
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16-03-2016, 12:32   #3
Cornelius Crow
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Quote:
Originally Posted by looksee View Post
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.

Last edited by Cornelius Crow; 16-03-2016 at 12:36.
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16-03-2016, 17:34   #4
The Princess Bride
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What exactly does a Palliative care service provide?

To add to what Loop Zoop has already said, the following is an outline of the Midlands palliative care services.
I'd imagine that the other Irish service providers would be quite similar.

What is the Specialist Palliative Care Service?

We are a team of specialist healthcare professionals who provide care, support & advice to help patients & their families facing problems associated with life limiting illness.

The team currently comprises a consultant in palliative medicine, specialist nurses, social workers and physiotherapists.
We work closely with your professional primary caregivers, including your GP, public health nurses, community teams, hospital teams & staff in nursing homes & community nursing units.

How we can support you.

We will assess you for pain, sickness, constipation, breathlessness, anxiety & other symptoms. We aim to manage these symptoms quickly & effectively.
We will offer psychological, spiritual, social & emotional support for your family in bereavement. We will help you to achieve the best quality of life, in the place of your choice, where possible.

We will help you manage your condition & its impact on your family.

We will enable you to make informed choices about your care.
We will provide a link between you & other services, for example, night nursing & hospice carers/carers respite.

How our service works.

We will assess you if you have been referred to us with a life limiting condition with multiple or complex needs, regardless of diagnosis & age. Your plan of care is based on this assessment.

We regularly review your progress to ensure that we are achieving our aims of care.

We are happy to hear from you between visits.
We are happy to answer your questions & welcome your opinions.

If your condition stabilises or improves & your needs have been met, you might be discharged from our service.
And if you were discharged, you can be referred to our services again.

The specialist palliative care service provides care in the last years, months and days of life.

(Provided by the HSE & supported locally by the Laois, Offaly, Longford North & South Westmeath Hospice Organisations, The Irish Cancer Society & The Irish Hospice Foundation. (July 2014 and this is reproduced (March 2016)with permission by the team Leader.)
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