Palliative care needs to be improved before the government considers the introduction of voluntary assisted euthanasia, two of Hospice Malta’s health professionals said.

Anna Frendo, the Chief Clinical Officer at Hospice Malta, and Jurgen Abela, a doctor who has worked with Hospice Malta since 2006, were interviewed by The Malta Independent on Sunday following the government’s launch of a public consultation exercise intended to lead to legislation on Assisted Voluntary Euthanasia (AVE).

Hospice Malta will never judge anyone over what they are feeling, Frendo said. “However we feel there is a lot more to be done for palliative care. There are so many gaps which exist,” she said, in terms of the provision of palliative care services, adding that “we need to try and fill those gaps.”

Abela said that Hospice Malta’s response to suffering is the adequate, timely and holistic provision of palliative care. Abela said that AVE is not in line with Hospice Malta’s vision. “What happened in other countries was that, at times, when assisted suicide or euthanasia was introduced, there was an impact on palliative care services.”

Frendo and Abela spoke of the aspects of palliative care that need to be addressed which, they believe, should be done before the government considers the introduction of AVE.

They spoke of the need of training for all healthcare professionals in palliative care techniques. “All need to be trained in how to deliver palliative care to target not just the physical, but also psycho-social and spiritual aspects,” Frendo said.

Frendo also spoke of the need for more availability of palliative care services, which, she said, should be available 24/7 for those living in the community. “If a palliative care patient in the community encounters an issue at 1am they do not find anyone able to help.” She said that more support is needed for palliative care patients in the community when they require it. 

Frendo said that a palliative care medical officer has certain knowhow, and so would know how to better manage pain. “We need to train more people. People might go to hospital and have unnecessary interventions made, pain might not be assessed properly etc.”

With regards to medications, Abela said that there is always place for more medications to be introduced in Malta and be made readily available to help manage symptoms.

Lack of systematic universal pathways for advanced care planning

Abela said that the title of the document proposed by the government is Assisted Voluntary Euthanasia, but what is actually being proposed is assisted suicide. “We need to understand what is actually being proposed.”

He said that many times, people faced with an incurable disease feel as though they are a burden to society and their family. “So even if there are safeguards, how can we be reassured, as professionals, that a patient is not feeling a sense of pressure to go down that route because they no longer feel like they are an asset to society, possibly because their ‘identity’ in society changed since their illness emerged because they might be unable to work.”

Abela said that there are many gaps in palliative care provision, and that “we are putting the cart before the horse” with the government’s proposal before fixing and addressing the lacunae present.

Euthanasia and assisted suicide are not part of the domain of palliative care, he added.

“Presently palliative care in Malta is provided by two entities, the government provides it at the Palliative Care Unit at Sir Anthony Mamo Oncology Centre (SAMOC) for oncology patients, and Hospice Malta provides community palliative care for oncology patients and others. Obviously we are inundated, and the service is what it is, it is not 24/7,” he added.

“Even more fundamentally, there is a fear to discuss non-treatment decisions, and when to call stop to treatment. It is the elephant in the room and nobody talks about it. There is pressure by family, patients and doctors to continue treating when it is failing and might be causing undue side effects. I am not only referring to chemotherapy and cancer, it could also be the case when someone was admitted to hospital 13 times in a year – there might be something fundamentally wrong in their condition, and a plan might need to be drafted on the realistic expectations of the patient’s treatment,” Abela said. “This is called joint management planning, for the best possible outcome for the dignity and quality of life of the patient.” 

Another fundamental issue in Malta, he said, is the lack of systematic universal pathways for advanced care planning. “I am not referring to living will, which is in the government’s proposal. The idea of advanced care planning involves discussing with the patient over a span of time, and not just a single session where you plan out a patient’s life.” For example, it could include reducing treatment and then meeting again to review some time later. That, he said, is an example of advanced care planning, done through continuous discussion.

Asked how, as palliative care professionals, they help patients moving into end of life care, Frendo said that Hospice Malta has a care plan for each and every one of the families who come to it. “The care plan is not only about the patient. The family would be suffering as well. When we first meet a patient, we start a care plan, looking at the overall situation physically, psychologically, spiritually, and socially,” she said. A care plan for each family could change day by day, she added. “We need to be present as much as possible when they need. It is pointless to, if something happens, see a patient a week later as that would be too late. We are always running against time.”

Social isolation

They also highlighted the issue of social isolation for people with a terminal illness. Asked whether families, knowing that the patient is going to pass away, start to distance themselves even without realising, both said that issues they’ve seen include a lack of open communication, and things being kept hidden. “This causes unnecessary suffering on both the patient and the family,” they added.  

Frendo said that Hospice Malta is considering extending the opening times of the Day Therapy Unit, so that patients would be able to spend more time there. “While here, people form friendships. It is also important to have goals to make life worth living. Instead of going for longer-term goals, we target shorter-term goals.”

The Day Therapy Unit provides a blend of physical, emotional, and social care in an informal, relaxed, and friendly atmosphere, where patients can connect, engage, and receive medical support. It offers an array of services designed to address the diverse needs of its patients, including physiotherapy to support mobility and reduce discomfort, psychological support to assist with emotional well-being, and social work services to provide guidance on practical matters. Spiritual guidance is available for those seeking religious or personal reflection, while complementary therapies offer additional relief. 

“The day therapy unit offers a social but therapeutic setting,” she said. This helps tackle social isolation that some patients face if at home alone, she explained. There would be physiotherapy, group therapy, aside from the social aspect of it. “We had a carnival party, people were dancing and enjoying yourselves. It shows life is worth living.”

Frendo said that Hospice Malta is outsourcing an ambulance which can provide oxygen to bring such patients to St Michael Hospice. “We are also going to introduce, later this year, a breathlessness clinic for people with respiratory issues. There will be a lecture offered for the patient and also one of their relatives, and they will be taught to make the full use of the remaining lung function they have.”

Asked how palliative care professionals cope with seeing people going through such tough times, Abela said that “the day you stop feeling for a patient who is suffering would be the day you should stop and change profession. The effect on us as individuals is both important and necessary. You also need to be able to gauge what you yourself are passing through.” Hospice Malta, as an entity, he said, provides a lot of support to staff, both on an individual and group level. “There are various methods through which we can get support for this onslaught on our emotions.”

Asked whether palliative care is enough for people constantly in pain, or if they should eventually have the assisted voluntary euthanasia option being proposed by the government, Abela said it is difficult to answer. 

“Medicine has advanced. Miracles are not of this world, but there are many treatment options. We could improve these options, certainly,” Abela said. “There might be certain situations where someone is in pain, but they resist being given something strong due to misconceptions, such as believing that if they start that treatment they would soon die, or would become an addict etc. There are other things that can be done when there is uncontrollable suffering, which only happens in a very, very small minority of patients. From a doctor’s perspective, and being someone who had a close relative pass away, we should not underestimate the power of medical treatment to reduce suffering.”

Patients are scared

The discussion on the government’s euthanasia proposal is scaring patients into thinking that because their disease is incurable they will definitely need to suffer, Frendo said, “and this is worrying me. From what patients are hearing, they are feeling as though they will definitely suffer, always hearing arguments like patients will be left desperate.” Many a time it’s not the case, she said, “but they are afraid.”

Abela said that when people come to the end of their life, many just pass away without any issues. “We cannot give the impression that because someone has an incurable disease they will de facto suffer until the end of their life,” he said.

Frendo said that Hospice Malta is spending €30,000 a month on carers sent to patients’ homes. “But it is not enough. I thank the Ministry for Social Policy and Children’s Rights for supporting us,” she said, adding that the demand is there. This sort of support also helps families who are caring for their loved ones, she continued, adding that this also helps those patients who might feel as though they are a burden on their loved ones not feel that way, because a carer would be helping. 

Asked if they have had patients who expressed their wish for voluntary euthanasia, Abela said that it has happened maybe twice or three times during his time working in palliative care. He spoke of the importance of not judging and understanding that the patient is suffering.

He said that euthanasia is both illegal and against his principles, and spoke of helping the patient in different ways. “From my personal experience when you talk to these patients there is many a time something which can be addressed…be it on a physical or non physical level. In these instances we worked on trying to address the issues we found.”