Terminal Illness

How will population ageing affect future end of life care?

By Anna Bone

Increasing population ageing means that deaths worldwide are expected to rise by 13 million to 70 million per year in the next 15 years. As a result, there is an urgent need to plan ahead to ensure we meet the growing end of life care needs of our population in the future.

Understanding where people die, and how this could change in the future, is vital to ensuring that health services are equipped to support people’s needs and preferences at the end of life. As researchers at the Cicely Saunders Institute, King’s College London, we investigated trends in place of death in England and Wales, and found that deaths occurring in care homes could more than double in the next 25 years if recent trends continue.

Using official records on over five and a half million deaths, as well as population forecasts, we estimated the number of people who will die in a range of different settings in years to come. The intention behind this study is that it will help to guide future planning of health and social care. From 2004 to 2014, the proportion of deaths occurring in care homes increased from 17% to 21%, with numbers rising from 85,000 to 106,000 per year. If this trend continues, the number of people dying in care homes will double to over 220,000 per year by 2040, and care homes will overtake hospitals as the most common place to die. Home deaths are also projected to increase over this period to over 216,000 deaths a year. Together, this means that deaths in the community are expected to account for over two-thirds of all deaths by 2040.

We also know that, increasingly, people are living and dying with multiple illnesses and frailty, which adds complexity to their care needs. The rising number of people with complex illness in the community is a challenge for end of life care. A recent study has shown that palliative care needs are expected to increase by 42% by the year 2040. We need greater integration of specialist palliative care into primary care services, as well as more training in palliative care for general health professionals, to ensure that those with palliative care needs can access services they require.

The projected rise of deaths in care homes and in peoples’ own homes is striking. We must ask care home and community services whether they are equipped to both support such an increase in demand and provide high quality end of life care. How can we provide the workforce needed to care for this growing patient group? To enable people to die in their preferred place in future, we need to ensure adequate bed capacity, resources, and training of staff in palliative and end of life care in all care homes in the country. These projections warn of the urgent need to invest more in care homes and community health services. Without this investment, people are likely to seek help from hospitals, which puts pressure on an already strained system and is not where most people would prefer to be at the end of their lives.

The time has come to test new approaches to care in order to ensure that we address this growing need of our population in the years to come. There are promising examples of innovations in care to increase the reach of palliative care services in community settings, for example project ECHO, which facilitates knowledge-sharing between specialist palliative care services, such as hospices, and general health care professionals such as those in care homes. In an era of increasing need alongside constrained health and social care budgets, developing and testing innovative ways to provide high quality care with minimal resources is imperative.

In the words of Cicely Saunders, the founder of the modern hospice movement, “how people die remains in the memory of those who live on.”The inevitable population changes described here will affect all of us, directly or indirectly, in the years to come. It is time for us as a society to have an open discussion about how we want health services to be delivered to people towards the end of life. Crucially, we need better evidence on how we can best support a growing number of older people as they reach the end of their lives.

Anna Bone is a PhD Training Fellow at the Cicely Saunders Institute, King’s College London. The themes from this blog post come from The Changing Face of Volunteering in Hospice and Palliative Care, published by Oxford University Press.

 

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Study Encourages Having a Bucket List Talk

Talking to Doctors About Your Bucket List Could Help Advance Care Planning

February 8, 2018 by Stanford University Medical Center

For physicians, asking patients about their bucket lists, or whether they have one, can encourage discussion about making their medical care fit their life plans, according to a study by researchers at the Stanford University School of Medicine.

A bucket list is a list of things you’d like to do before you die, like visiting Paris or running a marathon. It’s a chance to think about the future and put lifelong dreams or long-term goals down on a piece of paper.

For doctors, knowing their patients‘ bucket lists is a great way to provide personalized care and get them to adopt healthy behaviors, said VJ Periyakoil, MD, clinical associate professor of medicine, who said she that she routinely asks her patients if they have a bucket list.

“Telling a patient not to eat sugar because it’s bad for them doesn’t work nearly as well as saying, for example, if you are careful now, you will be able to splurge on a slice of wedding cake in a few months when your son gets married,” Periyakoil said.

The study will be published Feb. 8 in the Journal of Palliative Medicine. Periyakoil, an expert in geriatrics and palliative care, is lead author.

The researchers, who surveyed 3,056 participants across the United States, found that by far the majority of respondents—91 percent—had made a bucket list. Survey results also showed that respondents who reported that faith and spirituality were important to them were more likely to have made a bucket list. The older the respondents were, the more likely they were to have a bucket list, and, not surprisingly, those younger than 26 tended to include more “crazy things” on their lists, such as skydiving.

Bucket list categories

Six general themes tended to describe the items on respondents’ bucket lists: 79 percent included travel; 78 percent included accomplishing a personal goal, such as running a marathon; 51 percent included achieving a life milestone, such as a 50th wedding anniversary; 16.7 percent included spending quality time with friends and family; 24 percent included achieving financial stability; and 15 percent included a daring activity.

“When you just Google the term ‘bucket list,’ it’s huge how much interest there is in this,” Periyakoil said. “It provides a very nice framework for thinking about your life goals, health and your mortality.”

Past research has found that when doctors talk to patients—especially those with chronic or terminal illnesses—about the patients’ goals for future care, it can be a vital part of the advance-care planning process. But it’s often awkward to have these conversations, particularly when they are about the end of life, the study said.

“If a patient wants to attend a beloved grandchild’s wedding or travel to a favored destination, treatments that could potentially prevent her from doing so should not be instituted without ensuring her understanding of the life impact of such treatments,” the study said.

Discussing a patient’s bucket list is just a good way to start these conversations, Periyakoil said. Most people are far more open to talking about their life’s goals in this context before filling out an advance directive, a written statement of a person’s wishes regarding medical treatment at the end of life, Periyakoil said.

‘Find out what actually motivates them’

“It’s important for physicians to talk to patients and find out what actually motivates them,” she said. She encourages both doctors and patients to bring up the topic of a bucket list. By discussing how a treatment or surgery might affect the patient’s life, and then discussing what the patient’s goals are, the best possible care plan can be laid out, she said.

“I had a patient with gall bladder cancer,” Periyakoil said. “He was really stressed because he wanted to take his family to Hawaii but had treatment scheduled. He didn’t know he could postpone his treatment by two weeks. When doctors make recommendations, patients often take it as gospel.”

After an informed discussion about his options and the side effects of the cancer treatments, he and his physician decided to postpone the treatment. He made the trip to Hawaii with his family, then returned to start cancer treatments, the study said.

“Patients don’t see the relevance of an advance directive,” said Periyakoil. “They do see the relevance of a bucket list as a way to help them plan ahead for what matters most in their lives.”

Explore further: Most physicians would forgo aggressive treatment for themselves at the end of life

More information: Vyjeyanthi S. Periyakoil et al, Common Items on a Bucket List, Journal of Palliative Medicine (2018). DOI: 10.1089/jpm.2017.0512

Journal reference: Journal of Palliative Medicine

 

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Resourceful Books

Communication in palliative care [reading list]

Palliative care is now a cemented service offered by health care services globally, and in the United Kingdom the hospice care sector provides support to 200,000 people each year. The care given to the terminally ill, as well as their family and friends is vital in supporting individuals through what is, for most, the most challenging time of their lives. This care ranges from clinical medical practice to spiritual support, and aims to put individuals in as much comfort as is possible. People often find it difficult to discuss death and the topic is still widely considered to be taboo. This is in direct conflict with the principles of palliative care, which encourages active and clear communication from all those involved in the process.

To convey the importance of communication in effective palliative care, and encourage an open dialogue on the subject of death and dying, we have collated a reading list on these topics below.

Communicating with children when a parent is dying” by Cynthia W. Moore and Paula K. Rauch from the Oxford Textbook Communication in Oncology and Palliative Care (2017)

This chapter provides suggestions for clinicians on supporting parents’ open communication with their children, drawing on the authors’ extensive clinical experience of providing parent guidance to patients.

Discontinuation of Life-Sustaining Therapies” by Kathy Plakovic from the Clinical Pocket Guide to Advance Practice Palliative Nursing (2017)

The authors outline how withholding and/or withdrawing life sustaining medicines are processes that fundamentally rest on the shared decision-making of carer, patient, and family.

Defining a ‘good’ death” by Karen E. Steinhauser and James A. Tulsk from the Oxford Textbook of Palliative Medicine 5th Edition (2015)

This chapter explores the reappearance within the last 40 years of the definition of a ‘good death’ in medical contexts, and what the clinical implications of using the terminology ‘good death’ may be for practitioners and patients alike.

The doctor’s room by Hush Naidoo. CC0 public domain via Unsplash.

Truth telling and consent by Linda L. Emanuel and Rebecca Johnson from the Oxford Textbook of Palliative Medicine 5th Edition (2015)

This chapter focuses on the role of truth-telling in therapeutic relationships and the ways in which effective communication can maintain hopes and deliver information sufficient for informed consent at the same time in palliative care.

Cicely Saunders and her early associates: A kaleidoscope of effects” by David Clark from To Comfort Always: A History of Palliative Medicine Since the Nineteenth Century (2016)

David Clark looks at the specific contributions made by Dr Cicely Saunders and her colleagues to modern palliative care.

Talking with patients” by Catherine Proot and Michael Yorke from Life to be Lived: Challenges and Choices for Patients and Carers in Life-threatening Illnesses (2014)

The authors discuss how talking with patients stands at the heart of the patient-carer relationship. This communication involves providing information, but also listening, as patients must feel that their concerns and feelings are understood.

Talking and Working with Dying Patient: True Grief and Loss” by Lisa Humphrey from The Oxford  Handbook of Ethics at the End of Life (2016)

A palliative care and hospice physician reflects on the lessons learnt about grief and dying over the course of her training and career.

Think adult—think child! Why should staff caring for dying adults ask what the death means for children in the family?” from the British Medical Bulletin

This article discusses the lack of awareness on the effect death has on children and how carers looking after ill parents should begin to consider the short and long term effects on children and offer appropriate support as part of their duty of care.

Featured image credit: Gress, park bench by Olesya Grichina. CC0 Public Domain via Unsplash.

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