【November 2018】3- The Integration of Palliative Care with Other Health Services

Written by the HFT Secretariat (Based on the content of Prof. David Currow's presentation in the 2018 International Conference on Palliative Care in Long-Term Care Settings - Integration of Palliative and Long-Term Care)

Prof. David Currow currently holds positions as the Professor of Palliative Medicine at the University of Technology Sydney, the Matthew Flinders Distinguished Professor of Palliative and Supportive Care at Flinders University, and the Associate Director (Research) at the Wolfson Palliative Care Research Centre at the University of Hull in England.

The main focus of Prof. Currow’s talk is to demonstrate how palliative care is essential across all categories and why initiative should be taken to integrate palliative care with other health services. He divides his talk into three parts: First, the need to hear from patients; to understand what they have to tell us about care at the end-of-life. Secondly, how we can provide needs-based palliative care, and finally he suggest ways to integrate palliative care with other health services.

At the beginning of his talk, Dr. Currow shares his reflections from his recent trip to Paris, where he visited Hôtel Dieu, the oldest hospital in Paris on the banks of the Seine. Dr. Currow says that this was the hospital that changed clinical practice when a group of doctors had stressed that health should no longer be a privilege, but something to be enjoyed by everyone.

Further, Prof. Currow points out that the life expectancy rate has steadily increased since 1870. In high income countries like Taiwan, Australia, Japan, and Korea, there has been a steady increase of three months added to the life expectancy rate every year over the last 160 years. This drastic change needs to be put into consideration as we consider how to integrate palliative care with other health services, and how we should meet this population in their needs. Professor Currow suggests that we do this by starting to listen to the patients’ needs and elaborates on why palliative care should be integrated with other health services.

What do Patients Value at the End of Life?

First, what do people value at the end of life? By conducting a survey that interviewed terminally-ill patients, the needs that came on top are controlling pain and symptoms, avoiding prolongation of the dying process, and relieving burdens. These needs can be viewed as the ability for one to carry out one’s personal and financial affairs as one would want.

Personal care also includes a broader concept of self-independence. Though symptom control is the most frequently-discussed issue, being independent as long as possible is also on top of the list when patients are asked what they want. The fear of being a burden to other people and of losing one’s independence and dignity are the most common worries. Optimizing one’s function and physical comfort is considered the ultimate goal for most patients.

Professor Currow further demonstrates his point of view via the Australia-modified Karnofsky Performance Scale (AKPS), that is, if patients’ function and APKS can be maintained above 70 for longer periods of time, they will have sufficient ability to live longer independently. By simply maintaining patients’ function, the shape of death is changed without changing the date of death.

Needs-Based Palliative Care

Second, Prof. Currow aims to answer what needs-based palliative care looks like for both patients and caregivers. He stresses the universal demand for palliative care across different diagnosis categories and mentions that patients with lung cancer and COPD often suffer from breathlessness at the end-of-life stage. For multi-morbidity and frailty patients, the decreased self-care functioning is also evident. The predominant symptom control concerns and loss of function concerns both lead to the same issue of one losing one’s physical function, and thus, imply that better physical symptom control allows patients to live with dignity and function normally without being a  burden to others.

A survey consisting of 27,000 interviews focused on caregivers’ needs indicates that regardless of the disease diagnosed, caregivers are in need of physical care, information, and emotional and spiritual support. When caregivers who recently experienced the death of a patient are asked if they would offer care again, 7.4% caregivers responded they would not provide care again, and 16.5% remained undecided.

If people are not willing to take on this role again, the lack of caregivers will no longer be a problem affecting just a small group of people, but will become a widespread problem. How caregivers can be cared for is now a challenge that lies ahead. By facing this challenge, we must reflect on whether society is paying enough respect to these caregivers rather than taking them for granted.

How Palliative Care can be Integrated with Other Health Services

Last but not least, how do we find ways to integrate palliative care with other health services? Prof. Currow suggests that we can approach this through primary care, other sub-specialist services, and all health care providers regardless of health system structures.

For primary care, when palliative care is introduced in time, a 23 minutes case conference with GP and health providers to address the immediate issues and future contingencies will greatly improve the mutual communication on what the patients’ core values are, and what can be done to help patients achieve them. Topics could be about what three major things may happen in the coming week or month, and what can be done in anticipation. Having a direct and candid conversation can increase patients’ self-care function, and enable them to cope with expected symptoms.

When the Karnofsky performance score was used to serve as an effectiveness measure for case conferences, the Karnofsky scores for patients receiving case conferences are on average 57.3 higher than patients who only receive routine care, scoring at 51.7. Hospitalization is also reduced to 1.26 when compared to those receiving routine care, at 1.7. Hospitalization is also reduced to 1.26 when compared to those receiving routine care, at 1.7.

For sub-specialist services like end-stage renal diseases patients who need dialysis treatment, palliative care teams can also intervene to achieve an optimum result of symptom management with renal professionals. It is a difficult decision whether to undergo dialysis treatment or not, but if both quantity and quality of life are considered, the answer becomes clearer.

For all health providers regardless of what their health systems are--whether special services, family physicians, community nurses or allied health practitioners--a single needs-assessment tool for palliative care is needed. For example, the Needs Assessment Tool: Progressive Disease (NAT:PD) can be introduced as a medium to identify patients with high levels of needs that might require referrals for full assessment by specialist services. This tool can assist caregivers to identify if the patients’ needs are beyond caregivers’ capabilities and also serve as a base evaluation for the specialist services that are necessary.

When we think about how to integrate palliative care into long-term care setting, we are actually putting all the expectations on caregivers. Therefore, how caregivers can receive a better support on EOL care knowledge and skill is another issue to look into.

The Privilege of Being a Palliative Professional

Prof. Currow concludes his speech with a quote from Oliver Sacks:

I cannot pretend I am without fear. But my predominant feeling is one of gratitude. I have loved and been loved; I have been given much and I have given much something in return; I have read and travelled and thought and written. I have had an intercourse with the world, the special intercourse of writers and readers.

Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.

― Oliver Sacks, Gratitude

Prof. Currow urges us to remember that palliative care is about individuals facing their mortality. Palliative professionals and allied health practitioners like us, who are all sentient beings, have this enormous privilege to reach out to others and participate in their adventures of life. We are making a difference with our daily work, but let’s try to make these differences greater in the years ahead by not becoming complacent.