Appeal for more end-of-life support

MORE out-of-hours support for end-of-life patients requiring specialised pain management are needed, according to a local carer, who has outlined the “nightmare” experience in looking after her late mother.

While the Irish Cancer Society does provide a night nurse for an average of 10 nights, up to a maximum of 14, the carer stated this is inadequate for anyone looking after a patient at home for a number of months.

Apart from this service, the carer claimed Milford Hospice, which is the main palliative care provider in the Mid-West, is not in a position to send out a night nurse to deliver pain relief for a patient in the middle of the night.

Nursing her mother, who was in her eighties, at home for four months, the carer stated phone support is only available from Milford after 6pm.

“No doctor ever came out to my home. I had to take my mother once to a doctor at 10.30pm, some four hours after I rang the surgery, as this was the only time he could see her.

“It was up two flights of stairs and she had a heavy bleed. A Milford nurse came once a week. On Christmas Day, after being up all night, I got a Milford nurse at 1pm to put on a drive for pain. You cannot access any doctor or nurses after 6pm, as there is phone advice only.

“There is very little help or support available if you want a cancer patient to stay at home.No one will come out at night, neither Milford home team or out -of-hours doctors.

“A GP finishes at 5pm but even then, once you are under Milford, they [doctors] say contact Milford. If you are well enough to attend a GP, I presume they will help you but when you are in your eighties and have advanced cancer, that is not possible.

“I was so shocked and disillusioned by the lack of support. I was under under the misconception that palliative care would be well resourced and well-managed, as all your loved one has is a short time, once they have a terminal illness.
“Shame on Health Minister Simon Harris for not responding or putting in place proper home care for patients with advanced cancer, who want to be nursed at home and die at home.

“It is cruel and lacks simple human kindness to a patient with very limited time left. Nurses who did provide the home care towards the end came in at midday to change her drive. They were very kind but they are working hard with very limited resources,” she stated.

Deputy Willie O’Dea recently tabled a Dáil question asking Minister Harris to outline his plan to provide home palliative care between 6pm and 6am to allow patients the dignity to remain at home.

Minister of State for the Elderly, Deputy Jim Daly, noted the HSE’s Palliative Care Services Three-Year Development Framework acknowledged that, unfortunately, there are variations in the availability of specialist palliative services, including out-of-hours care.

The framework seeks to identify the gaps that exist in the level of adult palliative care service provision. A national review of the need for access to a 24-hour service has commenced.

The issue was also raised in a Dáil question by Limerick Sinn Féin Deputy Maurice Quinlivan.

If a member of a team finds that a patient is experiencing ongoing pain, Mr Quinlan said a decision may be taken to admit the patient to Milford for treatment to address this issue.

Without knowledge of all the information concerning Milford’s enagement with this particular case, he said the centre couldn’t comment on the level of intervention it provided or how it tried to respond to certain situations.
“Normally, there would be a comprehensive programme in place to provide support to a patient. If there is an assesssment of a patient’s situation, Milford nurses call more often than one day a week.

He acknowledged Milford administers the Irish Cancer Society’s night nurse service and has a close relationship with GPs across the region.

If a cancer patient is fitted with a syringe drive, he said normally there are a number of follow-up visits to supervise pain relief management.

Asked who does a carer contact if a patient is suffering acute pain in the middle of the night, Mr Quinlan said the first point of contact is the GP, while Milford could also provide phone support.

He said if a carer informed Milford at night that they could not get a GP to come out, normally there would be fast turnaround with an assessment visit from a team member the following day, to establish if they need to be admitted as an in-patient.

“I am not aware of a lot of discussion among the palliative care team to say they have been to so many families who are having huge problems in the evenings in terms of GPs not responding,” he said.

The Mid-West HSE stated when a patient is resident in the community, the patient’s GP remains the primary care provider, but the Milford team work closely with the GP in relation to all aspects of patient care, including pain relief. It confirmed there are no plans to change the current service provision.

“If advice in relation to pain management is required, the Specialist Palliative Care Community Service and/or the GP can consult with the consultants in palliative medicine.

“The core service hours of the Specialist Palliative Care Community Service are 9am to 6pm, Monday to Friday, with a reduced service at weekends.

“Outside of normal hours, the primary carer is the patient’s own GP and there is also a telephone support service available from the in-patient unit at Milford Hospice from 6pm to 9am, seven days a week.

“If the patient has a medical card, each GP provides an out-of-hours service to General Medical Services (GMS) patients either themselves, their partner GP or a recognised rota of out-of-hours GPs. If the patient is not a GMS patient, the out-of-hours cover is a private issue between themselves and their GP.”

The Department of Health and the national HSE had not responded to queries at the time of going to press.

Milford Care Centre chief executive, Pat Quinlan, said, generally, if a patient is being supported by the specialist palliative care team, a member would return for a follow-up visit if they are alerted to a deterioration in the patient’s medical condition.

By Dan Danaher