CCBI News: Rehabilitative Palliative Care

March 15, 2024

Dear Friends of CCBI,

Rehabilitative Palliative Care

Enabling patients to live fully until they die is a laudable goal of hospice, hospital and home care for people at end-of-life. Much work has been done in pursuing this goal, and it is a little surprising to discover that it is not universally accepted. In fact, it can sometimes cause tension or even produce a type of conflict of goals, which some workers in the palliative care field are hoping to resolve.

The conflict or disagreement has arisen because of a development in palliative care, known as rehabilitative palliative care, which “… involves person-centred goal setting, to identify what matters most to each patient and makes this the shared focus of the interdisciplinary palliative care team.” Authors Tiberini and Richardson said in 2015 that this is a focus on function beyond symptoms, involving “… a patient’s symptoms in the context of their functional ability and personal goals.” Their work in palliative care involves clarifying ‘person-centred’ goals that identify what matters most to each patient at this point, and this becomes the shared focus of the interdisciplinary palliative care team.

Although personhood, autonomy and individuality are concepts that we tend to take for granted, we forget that, in advanced illness, a person’s identity and wellness can be eroded and diminished as physical independence decreases. Yet even in the face of physical decline, people with advanced illness can still focus, usually with help, on living a meaningful life. The Tiberini article cites the work of Nottelman et al., whorana randomised control trial of 288 patients with newly diagnosed advanced cancer and found that, “…participation in a 12-week interdisciplinary programme of outpatient rehabilitative palliative care significantly improved patients’ prioritised problems, including function and overall quality of life compared with usual care.” Similar findings have been published regarding palliative patients with a non-cancer diagnosis.

Evidence like this persuaded the World Health Organization in a Policy Briefing in 2023 to recommend palliative rehabilitation involving an interdisciplinary approach as a best practice. The recent use of the concept of ‘rehabilitative’ palliative care is not new to the hospice movement but was a central theme in Dame Cicely Saunders’ philosophy and vision for modern palliative care: “The work of all the professional team is to enable the dying person to live until he dies, at his own maximal potential performing to the limit of his physical and mental capacity with control and independence whenever possible.” The rediscovery or perhaps re-emphasis of this approach resounds well with the thought of Pope John Paul II in his Letter to the Elderly (1999). This long quote exemplifies his concern for our spiritual and personal well-being:

16. Faith thus illuminates the mystery of death and brings serenity to old age, now no longer considered and lived passively as the expectation of a calamity but rather as a promise-filled approach to the goal of full maturity. These are years to be lived with a sense of trusting abandonment into the hands of God, our provident and merciful Father. It is a time to be used creatively for deepening our spiritual life through more fervent prayer and commitment to the service of our brothers and sisters in charity.
Most commendable then are all those social programmes enabling the elderly to continue to attend to their physical well-being, their intellectual development and their personal relationships, as well as those enabling them to make themselves useful and to put their time, talents and experience at the service of others. In this way the capacity to enjoy life as God’s primordial gift is preserved and increases. Such a capacity to enjoy life in no way conflicts with that desire for eternity which grows within people of deep spiritual experience, as the lives of the saints bear witness.

So while there could be a slight clash of objectives where ‘rehabilitation’ smacks of recovery while palliative care appears to deal more with end-of-life medical decisions, grieving and bereavement, Pope John Paul’s words are a classic example of developed ‘both/and’ thinking, showing both aspects are necessary, as indeed Dame Cicely agreed, in advocating ‘living fully until the end.’ There is certainly tension between these two aspects, perhaps felt most by those who are living but knowing death is imminent, and who naturally express distress at parting from the world and at other times wanting to maximize the time available. It is to be hoped that staff trained in end-of-life matters will take their cue from the dying person in terms of helping to fulfill wishes and desires, physical, social and spiritual, while also looking to their physical care and comfort.

End-of-Life: (More than) A Neurosurgeon’s View

Dr Stephen Doran, a neurosurgeon and bioethicist as well as permanent deacon, wrote a book, To Die Well: A Catholic Neurosurgeon’s Guide to the End-of-Life (Ignatius Press, 2023), which treats of dying from a Catholic, spiritual perspective. For a rapid-fire ‘dose’ of bioethics on that topic, please see him on a ‘Busted Halo’ video (below). It’s a pleasant change to see the topic handled with some humour, which is often difficult to do in this field!

End-of-Life: (More than) A Lawyer’s View

An obituary in Thursday’s Globe and Mail is extraordinary! Paul Alexander was a lawyer and disability rights advocate, who lived most of his life in an iron lung chamber, with only a few hours free of it every day. Despite that incredible challenge he earned degrees in economics and law, practising as a lawyer and being driven to the courthouse every day, using a wheelchair once inside. His friends talk about his positivity and love of laughter, and that he had millions of followers on his social media account. The obituary recounts the words of one of his drivers: “… Mr. Alexander loved being interviewed and had a passion to show that disabled people had a place in society.”

He seems to have developed an iron spirit, strong in faith and strong in morale, happy to converse and laugh with people but also do the serious work of representing them in court. It is beneficial to hear about people like Paul Alexander, especially now that turning to euthanasia is becoming a welcome ‘choice,’ not only for those with physical or mental handicaps. When Pope John Paul II tells us to ‘live life until the end,’ and portrayed what that involves in his own, continuing, public appearances despite suffering from Parkinsons Disease, we can take hope. When a person of strong faith like Paul Alexander is in our midst, we can see the heights and depths of the human spirit in responding to severe challenges, and can again take hope. When it is our turn, let’s hope to be inspired by such people who illustrate what the strength and positivity of the human spirit can achieve, as gifts of the Spirit for which we must pray and in promoting the ‘culture of life.’

May Mr. Alexander rest in peace.

Enabling patients to live fully until they die in 2024 – Rebecca Tiberini – ehospice
Letter to the Elderly (October 1, 1999) | John Paul II (vatican.va)
rehabilitative-palliative-care-enabling-people-to-live-fully-until-they-die.pdf (hukstage-new-bucket.s3.eu-west-2.amazonaws.com)
To Die Well: Discussing Hope at the End of Life With Catholic Neurosurgeon Dr. Stephen Doran – Busteanderd Halo
Texas man who used an iron lung for decades after contracting polio as a child dies at 78 – The Globe and Mail

Pope Francis’ Intentions for March: FOR THE NEW MARTYRS

We pray that those who risk their lives for the Gospel in various parts of the world inflame the Church with their courage and missionary enthusiasm.

Moira and Bambi