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Palliative services in Ireland are desperately in need of investment

Author: Professor John Crown
18 May 2015
  • Leading oncologist and Independent Senator Professor John Crown writes exclusively for ehospice on the need for investment in palliative services

In a powerful article one of Ireland’s leading oncologists and Independent Senator, Professor John Crown, says the country is desperately in need of investment in palliative services. He says patients of cardiologists, geriatricians, neurologists and other specialities need to have the same access to specialist hospice and palliative services that cancer patients do.

Compassionate, high quality cancer treatment requires the input of specialists in symptom control and often, end of life care. The specialty of palliative medicine and the full range of palliative services including hospice are essential, irreplaceable components of the skill mix of cancer care.

Medical oncologists treat patients with cancer in very different clinical situations. A minority of our patients have cancers which have a high chance of cure with our drugs. A larger number get treatment as an “adjuvant” following potentially curative surgery in an attempt to reduce the likelihood of relapse and death. In both of these situations relatively short intensive treatments are given, and patients understand that there can be a major survival “pay-off” in return for some months of variably severe side effects. Even in this hope-filled clinical setting palliative experts can have crucial roles in controlling symptoms of cancer and side effects of therapy.

Sadly, many of our patients are known to have an ultimately fatal diagnosis from the time of our first consultation with them. This group will include some patients who have highly treatable but ultimately incurable cancers, e.g. metastatic breast carcinoma where, despite incurability, survival of four-five years is the norm. For others survival is sadly very short and the impact of drug treatment generally very modest, typically prolonging survival by months. Pancreas cancer is a good example.

Oncologists realise that the needs of patients with incurable diagnoses are unique and require thoughtful attention. Patients with limited life expectancies will place a higher priority on quality time, and will be less tolerant of onerous treatments with marginal impacts than will the potentially curable. Close interdisciplinary cooperation with palliative services is crucial, even during phases of active specific anti-cancer treatment.

When the time for active anti-cancer treatment has passed most oncologists will do their best to ensure that their dying patients are treated appropriately during their final illness. The role of the palliative and hospice services increases. Most patients nowadays will have the opportunity to determine their choices for the location of their care during their final illness. The full range of choices should be available to every dying patient, including in patient hospice care, home care, or in some cases hospital based hospice care.

I believe that in oncology we do this relatively well. The inevitably fatal nature of many cancer diagnoses has resulted in a greater emphasis in our speciality on end of life care and the transition to a purely palliative approach for patients with cancer is more evolved. Consequently people who are dying of cancer often have better deaths than those who die from other causes. In this regard we lean on and learn from the expertise of our colleagues in the palliative disciplines.

Palliative services in Ireland desperately need investment. Outside of the hospice, the likelihood that your experience of death will be somebody’s specific responsibility varies according to the norms of the speciality that treats what it is that you will die from. The patients of cardiologists, geriatricians, neurologists and other specialities need to have the same access to specialist hospice and palliative services that cancer patients do.

We see it too often in hospitals all around the country that patients are disempowered at the point of death. Often hospitals are not hospice friendly, some hospitals see their duty as being done where the patient has survived a medical crisis, and the links and pathways to hospice care are not suitably explored.

Often doctors are too busy to take the time that is required with patients to discuss the nature of their impending death, while for families taboo and emotion prevents these things from being brought up. The consequence of this is that the patients suffer needlessly in death.

We urgently need to develop a legal framework which will allow patients to make decisions about how they wish to be cared for before they are incapacitated by illness.

In the early hours of every morning many frail and elderly and incurable patients are rushed into emergency rooms as a result of a medical crisis. Very often they can be stabilised through treatment and medication. They can be put into cardiac care units, their bodies flooded with antibiotics, and attached to ventilators. Many would wish they had not been.

Few people would choose to have such a life. However in the absence of patient choice empowerment this is how many people experience their last moments of life.

Predominantly people given a choice prefer to die at home and where possible our medical, healthcare, and palliative systems should facilitate such wishes.

For others, the complexity of their conditions require that they receive levels of treatment which are impossible, or inappropriate, to receive at home. For them we need a robust hospice infrastructure, or well integrated hospital based palliative units.

No one should unnecessarily suffer their last days in hospital if that is not their wish.

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