Paediatric palliative care improves patient outcomes and reduces healthcare costs: evaluation of a home-based program

Abstract

Background

Around the world, different models of paediatric palliative care have responded to the unique needs of children with life shortening conditions. However, research confirming their utility and impact is still lacking. This study compared patient-related outcomes and healthcare expenditures between those who received home-based paediatric palliative care and standard care. The quality of life and caregiver burden for patients receiving home-based paediatric palliative care were also tracked over the first year of enrolment to evaluate the service’s longitudinal impact.

Method

A structured impact and cost evaluation of Singapore-based HCA Hospice Care’s Star PALS (Paediatric Advance Life Support) programme was conducted over a three-year period, employing both retrospective and prospective designs with two patient groups.

Results

Compared to the control group (n = 67), patients receiving home-based paediatric palliative care (n = 71) spent more time at home than in hospital in the last year of life by 52 days (OR = 52.30, 95% CI: 25.44–79.17) with at least two fewer hospital admissions (OR = 2.46, 95% CI: 0.43–4.48); and were five times more likely to have an advance care plan formulated (OR = 5.51, 95% CI: 1.55–19.67). Medical costs incurred by this group were also considerably lower (by up to 87%). Moreover, both patients’ quality of life (in terms of pain and emotion), and caregiver burden showed improvement within the first year of enrolment into the programme.

Discussion

Our findings suggest that home-based paediatric palliative care brings improved resource utilization and cost-savings for both patients and healthcare providers. More importantly, the lives of patients and their caregivers have improved, with terminally ill children and their caregivers being able to spend more quality time at home at the final stretch of the disease.

Conclusions

The benefits of a community paediatric palliative care programme have been validated. Study findings can become key drivers when engaging service commissioners or even policy makers in appropriate settings.

Read the full open access article here.

The status of palliative care in the Asia-Pacific Region

“…it is easy to become immersed in a sense of failure when faced with this enormous challenge. When our hands are empty and our hearts heavy, reach out to colleagues, be kind to ourselves, turn to the joy and the beauty to be found in the simplicity of a smile, an act of kindness, a song or a sunrise, reconnect and persevere together…”

Spruyt O. The status of palliative care in the Asia-Pacific Region. Asia Pac J Oncol Nurs [serial online] 2018 [cited 2018 Jan 22];5:12-4. Available from: http://www.apjon.org/text.asp?2018/5/1/12/222133

 

End of life care: how do we move forward?

Abstract: Death and dying are inevitable. High quality and accessible palliative and end of life care can help people who are facing progressive life-threatening and life-limiting illness, and those dear to them, by focusing on their quality of life and addressing the problems associated with their situation. This paper draws attention to the scale of the challenge, some of the key areas we could address and the shifts in culture, mindset and leadership approach that are needed.

Conclusion: The Ambitions for Palliative and End of Life Care Framework explicitly recognises through its six ambitions, i.e. each person is seen as an individual, each person has fair access to care, maximising comfort and wellbeing, care is coordinated, staff are prepared to care, and each community is prepared to help. It acknowledges that achieving this whole-system approach of ‘what good looks like’ in palliative and end of life care requires every individual, organisation and society as a whole to work together, so that the goal of the best possible end of life care can be achieved.

Read the full article here. (J R Coll Physicians Edinb 2017; 47: 369–73)

How to uphold patient dignity at the end of life

This article is from Palliative Matters.

According to Dr Harvey Max Chochinov, international expert in dignity and palliative care, dignity is not just a concept associated with managing bodily functions but also a dying person’s perception of how they are seen by others. For people who are dying, they feel a loss of dignity when focus on their illness or disease leaves them with the sense they have been defined generically as a patient and all they have.

The research also shows significantly higher rates of depression, anxiety and feelings of hopelessness in people experiencing a loss of dignity and healthcare workers have a responsibility in understanding the impact of their interactions with patients.

Read the full article here.

 

 

 

 

Palliative Care Improves Quality of Life and Survival, Lessens Patient Symptoms: Study

This article is originally from PCAeNEws.

In a new study published in the Journal of the American Medical Association, researchers from the University of Pittsburgh School of Medicine found that palliative care allowed people with serious illness to enjoy better quality of life, improved survival rates and fewer symptoms. Palliative care helps to provide relief from symptoms, stress and pain brought about by a health condition, and may be provided by specialists or primary care doctors.

The researchers found that the people with serious illnesses were satisfied with their overall health after receiving palliative care and saw that palliative care was connected to better planning for advanced care, lower utilisation of health care and satisfaction of the care provided. Dio Kavalieratos, the study’s lead author, added that it is crucial to figure out how to integrate palliative care into patients’ usual care experiences so it can be a health care standard for those who are seriously ill.

Palliative care has received much attention as a means of improving patient survival rates over the last five years. But, the researchers note that there remains a need to develop ways of examining how palliative care affects caregivers, on top of people with serious illnesses.

Full article can be found here.

 

Barry Ashpole’s Media Watch (#482)

Barry Ashpole Media Watch

The latest issue of Media Watch, compiled and annotated by Barry R. Ashpole (Ontario, Canada) can now be downloaded here. More reports can be found at IPCRC.NET

Article highlighted to be of particular interest:

Burnout in Families. The Emotional Burden of the “Traumatized” Families

JOURNAL OF FAMILY MEDICINE & DISEASE PREVENTION, 2016;2(4).  A person who assists a suffering person, beyond the professional role, is indicated generally by the term “caregiver”. The definition of Burnout in families is fairly recent, because the psychology of trauma has ignored a large segment of the traumatized and disabled subjects (family and other assistants of the “suffering people) unwittingly, for a long time.One of the most common models of intervention is based on the principle that the observation unit for the understanding of the disorder is not the single individual but the relationship between individuals. https://goo.gl/cCmhCs

Hospital, local palliative care network and public health: how do they involve terminally ill patients?

EUROPEAN JOURNAL OF PUBLIC HEALTH | Online – 28 September 2016 – The international economic crisis has highlighted the need for a spending review which also involve national health care costs. In particular, it has been observed that over one quarter of the entire health care expenditure is spent on patients in the last year of life which represents about 1% of the entire population. It has been suggested that the use of the acute hospital system, in particular critical care services (such as intensive care units) and associated invasive tests and procedures for patients with end-stage chronic conditions may have limited potential benefit for patients’ quality of life. Despite the fact that palliative care is generally accepted to improve the quality of life of terminal patients, there are still some concerns about its impact on reducing the cost of care attributable to hospital use. This information could be important for planning and optimizing the availability and appropriateness of healthcare services. https://goo.gl/bFG5wo

JKT Research Project – The Role of Leadership and Management of Palliative Care in Japan, Korea and Taiwan

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Submitted by: APHN Editorial Team (Taiwan) –  Hospice Foundation of Taiwan

JKT Research Project is a cross-national research project started in 2013. It involves 3 different cross-national research projects and yearly academic exchanges. This year, Hospice Foundation of Taiwan has the privilege to invite Prof. Yoshiyuki Kizawa from Japan, Prof. Young Seon Hong from Korea and Dr. Chun-kai Fang from Taiwan to share their point of views in the JKT Research Project TAIPEI.

The symposium is honored to have Prof. Yuh-Cheng Yang and Dr. Shih-Tze Tsai gave opening speeches to welcome the speakers and participants. In Prof. Yang’s speech, he explained the origin and purpose of this cross-nation research project, and also expressed his gratitude to co-host – Taiwan Academy of Hospice Palliative Medicine. Echoing the leadership theme of the symposium, Prof. Yang shares his point of view with a beautiful verse:

“As there is an old saying goes ‘the leader is like wind and the follower grass. When the wind blows, the grass must bend.’ The leadership in hospice and palliative care is most crucial to a successful care.”

HFT secretariat has sum up for our readers here:

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Japan

Prof. Kizawa is currently the Secretary General of Japan Society for Palliative Medicine (JSPM) and the Designated Professor, for the Department of Palliative Medicine of Kobe University Graduate School of Medicine. He elaborated the development of palliative care in Japan is first lead by the private sector, as the first Seirei Hospice established in 1981 which is the first hospice hospital in Asia. In 2007, Japanese government passed the Cancer Control Act, recognized the needs for palliative care to cancer patients and thus actively promoted palliative care. With the increasing needs, private sectors like JSPM decided to first start with education and certification.  By train-the-trainer strategy and board certification, qualified palliative professionals can be produced to meet the demand and at the same time under the supervision of JSPM.  In 2010, there were 1,197,012 registered deaths, and was expected to rise to 1,660,000 by 2040. Among the total deaths in 2010, 30% death of cause was cancer, 16% and 11% were caused by cardiac diseases cerebral and vascular accident. Currently 79% deaths occurred in Hospitals and only 3% in hospice. The medical fee of palliative care has been included in Japan’s NHI coverage system for hospitals with certified palliative units; patient only requires paying 30% of all medical cost. Monthly payment does not exceed a threshold of about USD 1,000. Each patient has the access to freely consult any hospital and make own decision. The Education training systems currently provided are PEACE project for physicians, ELNEC-J for nurses and CLIC for pediatric palliative care. Besides Education and certification, benchmarking has been adopted to make further follow-up review. The current palliative care system in Japan is an organized and comprehensive network, with pragmatic and efficient education system.

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Korea

Prof. Hong recently retires and is now the honorary professor of the Catholic University of Korea. Hospice was first bought in and began at the Calvary Hospice by Sisters of the Little Company of Mary in 1965. In 1998 Korean Society for Hospice and Palliative Care (KSHPC) was established, its memberships include physicians, nurses, social workers, pastors and volunteers. With the inauguration of KSHPC in 1998, KSHPC has started with Case Conference, CMR program for Physicians and Nurses, and also published the textbook for hospice and palliative medicine. During 2002-2004, KSHPC opened Busan and Daejon chapters, and also the Hospice Palliative Model Project for Terminal Cancer. During 2004-2008, two more chapters of Taegu and Chungbuk, holding 6th APHC and hold the Presidency of 2007 APHN council. 10 Year Cancer Control Plan was also published in 2006 and also the Standards for role of hospice and palliative care and for the hospice facility. Since 2012, two more chapters in Kwangju and Chunbuk was established. This year, Korean government announces the Law on the Hospice and Palliative Care and the Determination of Life Sustaining treatment for Terminally Ill Patients and Reimbursement of National Medical Insurance system for hospice palliative care.

Overall, Prof. Hong pointed out five aspects that worth paying attention to:

  1. Comprehensive national palliative care policies are vital for extending access to palliative care, especially like NHI reimbursement, Hospice law, and Provincial distribution of PCU.
  2. Government and all interested parties in medical, academic and social sectors prepare and collaborate together to make effective Enforcement Ordinance and Regulations of the Hospice law with the process of emerging consensus.
  3. Hospice palliative care service currently target terminal cancer patients and their families only. Patients with serious, life-threatening illness will still need to be included under NHI’s palliative care scope.
  4. Standardization of training and operation of advanced training program for all types of professionals who participate in the hospice palliative interdisciplinary team are required.
  5. The general public is still unfamiliar with Hospice palliative care services, more public campaigns are required to raise awareness.

For the leadership KSHPC is looking, is a leader with VISION ASIA quality, which means Vision: hospice spirit; Ability to attract donation; Social relationship; International relationship; and Academic interest. Prof. Hong concluded that the development and growth of Hospice in Korea has been largely dependent upon the vision and the ability of the institution leaders. Korean hospice is at the very important period of in its history, enactment of hospice law, which is containing determination of life sustaining treatment for terminally ill patient. So the role of leadership and management is even more important in palliative care in Korea.

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Taiwan

Dr. Chun-Kai Fang is currently the head director of Hospice and Palliative Care Center in Mackay Memorial Hospital, Board of Hospice Foundation of Taiwan and Council Member of Asia Pacific Hospice Palliative Care Network. He points out that though with honor Taiwan has significantly improved the ranking in the 2015 Quality of Death report to No. 6, there are still many things needed to be done to establish a sustained palliative care development strategy.

Dr. Fang stressed the core force of quality palliative care as staff. Only when you have enough and healthy staff, can they provide palliative care service from their hearts. Based on Dr. Fang’s SWOT analysis of current Taiwan palliative care, the strength of Taiwan is well developed academic societies, national policies and National health insurance system, and also the common knowledge people have with palliative care; however, Taiwan has a serious weakness of not having enough financial support. Take Mackay Memorial Hospital for example, since 2015 Mackay has expanded the 4 Full Care to 6 Full Care, including Whole Community and Whole Mind along with Whole Person, Whole Family, Whole Team and Whole Process. You can notice the quality Dr. Fang is after is no longer from hardware, but the softer side of patient’s heart. Whole mind means full heart and soul, Psychological services, and Psycho-oncology services; as for Whole Community, it means when patients are discharged from the hospital, the care will be continuous offered by the community/society.

As also being the Chairman of Asia Pacific Psycho-Oncology Exchange Foundation, Dr. Fang shares with us the application of Distress thermometer (DT) and Family Relationships Index (FRI). Both of DT and FRI are currently adopted by the family service systems. FRI is developed by the SaTSG of Medical Research Department based on grief theories and services of social workers and psychologists, and it is evident proved.

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In conclusion, no matter it is in Japan, Korea or Taiwan, its clinical palliative professionals and the academic experts are both contributing, hoping to make every life worthy and being respected. Besides these private sector efforts, public sectors like Korean and Taiwanese governments have also published the latest legislation on palliative care this year. Korean government announces the Hospice and Palliative Care and the Determination of Life Sustaining treatment for Terminally Ill Patients and Taiwanese government announces the Patient Self-Determination Act. This is surely a vibrant and cheerful update and a big step forward. This is the third year of speaker exchange between Japan, Korea and Taiwan. We are looking forward to seeing more sparks and more exchange and cross-nation collaboration continue on.

EAPC 2016 Early Researcher Award – enter now

The Early Researcher Award (formerly Young Investigator Award) was created as an annual award by the EAPC in 2009. This award is designed to recognise the work of young (novice) scientists and clinicians in the field of palliative care who have recently made, or are currently making an outstanding contribution to research. It aims to highlight their personal career development and their potential for the future.

The 9th World Research Congress of  the European Association for Palliative Care will be held in Dublin, Ireland, on 9 to 11 June 2016. The candidate should be able and willing to give a plenary lecture in English at the congress.Researchers from any country can apply.  Candidates can apply themselves, or be nominated by supervisor or similar.

All professions working within palliative care research are welcome to apply, both clinical and non-clinical.

Details of application can be found at the EAPC website http://www.eapcnet.eu/research2016/. Do remember to click on “Scientific” to be taken to the award application page!

Deadline: 13 December 2015

A cross-cultural study on behaviors when death is approaching in East Asian countries: What are the physician-perceived common beliefs and practices?

An article from Media Watch, compiled and annotated by Barry R. Ashpole (Ontario, Canada). More reports can be found at IPCRC.NET

Medicine, 2015;94(39):e1573. Responses were obtained from Japanese, Korea, and Taiwan physicians, respectively. While 50% of the Japanese physicians reported that they often or very often experienced families as being reluctant to discuss end-of-life issues, the corresponding figures were 59% in Korea and 70% in Taiwan. Two specific reasons to avoid end-of-life discussion, “bad things happen after you say them out loud” and “a bad life is better than a good death,” were significantly more frequently observed in Taiwan. Prioritizing the oldest of the family in breaking bad news and having all family members present at the time of death were significantly more frequently observed in Korea and Taiwan. Half of Taiwanese physicians reported they often or very often experienced the patients/family wanted to go back home to die because the soul would not be able to return from the hospital. In all countries, more than 70% of the physicians reported certain family members were expected to care for the patient at home. At the time of death, while no Japanese physicians stated they often experienced patients wanted a religious person to visit, the corresponding figure in Korean and Taiwan was about 40%. Uncovered expression of emotion was frequently observed in Korean and Taiwan, and 42% of the Japanese physicians reported family members cleaned the dead body of the patient themselves.

Read the full text article here.

NIH announces available end-of-life and palliative care grants

The National Institutes of Health (NIH) will be awarding grants toward research on the perspectives, needs, wishes, and decision-making processes of adolescents and young adults ages 12–24 with serious, advanced illnesses. The grants will also be supporting research on end-of-life/palliative care models that support the physical, psychological, spiritual, and social needs of 12–24-year-olds with serious illness, their families, and caregivers. NIH will begin accepting submissions January 6, 2016, for exploratory/development grants to fund projects of up to five years whose budgets “reflect the actual needs of the proposed project…read more

From Journal of Palliative Medicine

Hospice and Palliative Care Services in South Korea Supported by the National Health Insurance (NHI) Program

Rhee, Y. (2015) Hospice and Palliative Care Services in South Korea Supported by the National Health Insurance (NHI) Program. Health, 7, 689-695

Previous main body of research on end-life-care in South Korea has focused on developing services quality in hospital settings or service payment system in National Health Insurance Program. The delivery system of hospice and palliative care services has evolved in diverse ways but there is little research on reviewing the past history of development and whole picture of them so far. So, the aim of this study is to review the old hospice and palliative care system and also to introduce the current one supported by the National Health Insurance Program in South Korea. The palliative care or hospice services in South Korea have been available in diverse settings and provided by different organizations (i.e. catholic hospitals or charity organizations). Finally, it was set up in 2004 that the hospice team or official Palliative Care Units (PCUs) was established in hospitals, in order to meet the end-of-life care for the patients with terminal cancer under the Cancer Control Act. The current hospice and palliative care services such as pain management, bereavement services, and counselling can be reimbursed by National Health Insurance program since 2008. Nevertheless hospice and palliative care services are available to dying patients, yet the utilization rate of hospice and palliative care services or the length of stay in the palliative care unit (PCU) is still relatively short compared to other country systems. South Korea is undergoing several efforts to expand the services in PCU along with the development of quality indicators for PCU. Hospice and palliative care services are still new in the health care system and unfamiliar to the public so it requires raising awareness for medical professionals and the public as well as further research.

Click here to read the full paper.

From Health

 

Palliative care physicians' attitudes toward patient autonomy and a good death in East Asian countries 

Journal of Pain & Symptom Journal of Pain and Symptom ManagementManagement | Online – 28 March 2015 – A total of 505, 207, and 211 responses were obtained from Japanese, Taiwanese, and Korean physicians, respectively. Japanese (82%) and Taiwanese (93%) physicians were significantly more likely to agree that the patient should be informed first of a serious medical condition than Korean physicians (74%). Moreover, 41% and 49% of Korean and Taiwanese physicians agreed that the family should be told first, respectively; while 7.4% of Japanese physicians agreed. Physicians’ attitudes with respect to patient autonomy were significantly correlated with the country (Japan), male sex, physician specialties of surgery and oncology, longer clinical experience, and physicians having no religion but a specific philosophy. In all 12 components of a good death, there were significant differences by country. Japanese physicians regarded physical comfort and autonomy as significantly more important, and regarded preparation, religion, not being a burden to others, receiving maximum treatment, and dying at home as less important. Taiwanese physicians regarded life completion and being free from tubes and machines as significantly more important. Korean physicians regarded being cognitively intact as significantly more important. http://www.jpsmjournal.com/article/S0885-3924(15)00157-8/abstract

**Professor Tatsuya Morita has kindly made available the full manuscript for APHN members. Please log in here to read the full paper.

An article from Media Watch, compiled and annotated by Barry R. Ashpole (Ontario, Canada). More reports can be found at IPCRC.NET