Terminal Illness

Advance directives: How to talk with patients about them

Published in AMA Wire

A patient’s comfort in contemplating, completing or even discussing an advance directive can greatly depend on what the physician has to say and offer.

It is often an awkward situation, in large part because many patients only see the advance-directives process in terms of suffering and death. That does not have to be the case.

“When physicians approach advance-care planning from the aspect of living well and quality of life, then patients feel reassured and then they want to engage with you and tell you what matters most,” according to internist VJ Periyakoil, MD, director of palliative care education and training at Stanford University School of Medicine.

Dr. Periyakoil wrote the “Planning for End-of-Life Decisions with Your Patients,” online physician education module.

The module is part of the AMA STEPS Forward™ collection of more than 50 practice-improvement education modules. It is part of the AMA’s strong support of advance directives and the help it provides to physicians on end-of-life matters, including guidance from the AMA Code of Medical Ethics.

Medicare also has helped spur interest in advance directives, with payment starting in 2016 for every patient to have a voluntary consultation on the matter with a physician or qualified health care professional. This benefit has been widely used, with about 14,000 providers billing almost $35 million in the first year.

A recent review of 150 studies of advance directives found more than a third of Americans have them, in some form or another. That leaves a large majority—many with the most immediate need for advance directives—without written instructions that will protect their intentions or provide for trusted family or friends to make care decisions if they are unable.

A focus on what matters most

The CME credit-eligible module from the AMA is based on the Stanford University Department of Medicine’s Letter Project. The module’s central, downloadable element is a three-page letter template that in plain language guides the patient through expressing life values and goals, as well as care instructions such as palliative sedation.

The letter template is available in eight languages and written at a fifth-grade reading level. Patients can complete the letter by themselves or be aided by patient navigators or other clinicians. At Stanford, completed letters are scanned into the patient’s electronic medical record using a barcode.

Though not a formal advance directive or living will—those are governed on a state-by-state basis—the letter can be used as a worksheet to help patients express their wishes in simple language. A physician can include the letter in a patient’s medical record as patient-generated health data.

The module provides detailed advice about how to initiate the conversation. Dr. Periyakoil said her approach is to “normalize” the process by saying, “I ask this of all my patients.”

In that way, “patients don’t feel that they are singled out for this.” Her goal, she assures them, is “to provide you with the best possible care and to do that it really helps me to understand what matters most to you.”

The letter provides check boxes for standard end-of-life care questions and space for naming the individuals who can make medical decisions if the patient is unable, but starts and devotes most of its space for patient to write about what’s most important to in terms of what’s important in life:

“The physician can then move in confidence with clinical care that is in sync at all times with what the patient wants. Physicians often give medical advice or make care plans in a vacuum, “and we know very little about the patient as a person,” said Dr. Periyakoil.

“It is incredibly important to know everything there is to know about the disease,” she added. “It is equally important to know about the patient’s life goals and values,  so that the care we provide is guided by what matters most to the patient. .”

AMA’s STEPS Forward is an open-access platform featuring more than 50 modules that offer actionable, expert-driven strategies and insights supported by practical resources and tools.

Based on best practices from the field, STEPS Forward modules empower practices to identify areas or opportunities for improvement, set meaningful and achievable goals, and implement transformative changes designed to increase operational efficiencies, elevate clinical team engagement, and improve patient care.

Several modules have been developed from the generous grant funding of the federal Transforming Clinical Practices Initiative (TCPI), an effort designed to help clinicians achieve large-scale health transformation through TCPI’s Practice Transformation Networks.

The AMA, in collaboration with TCPI, is providing technical assistance and peer-level support by way of STEPS Forward resources to enrolled practices. The AMA is also engaging the national physician community in health care transformation through network projects, change packages, success stories and training modules.

 

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Mesothelioma Patients to Learn about Hospice

Published in mesothelioma.net

Palliative care experts are using the occasion of Aretha Franklin’s death to urge mesothelioma patients and others diagnosed with terminal illnesses to learn about hospice care and understand that it provides far more than just a “days before” benefit. Franklin’s family announced that she would be entering hospice care just three days before she died, less than the national median length of stay in hospice which is just slightly over three weeks and far less than the amount of time that the service is available. According to palliative care experts, when announcements are made that celebrities are entering hospice just days before their deaths, it confirms the public’s impression that hospice is a place to go before you die, rather than its actual goal of anticipating, preventing and managing patient suffering. The earlier mesothelioma patients enter hospice care, the more benefit they are able to get and the greater the improvement in their quality of life.

People diagnosed with mesothelioma who are considering hospice care would do well to learn about those celebrities who have used it to its fullest: columnist and author Art Buchwald called the five months he was in hospice “the best time of [his] life”, where he was able to continue working, seeing friends and dying with a minimum of discomfort, in a warm and comforting environment. Palliative care professionals are working to spread this news and reframe the narrative about what hospice care from “nothing more we can do” to “living as well as you can for as long as you can” writes Jennifer Moore Ballentine, executive director of the CSU Institute for Palliative Care, based at Cal State San Marcos.

In an article she wrote for the San Diego Union Tribune, Ballentine urges family members and physicians alike to remember that palliative care is available for mesothelioma patients and others with a life expectancy of six months or less who are no longer seeking treatment. Unfortunately, a study in the AMA Journal of Ethics found that specialty physicians are less likely to suggest palliative care than are family and internal medicine clinicians. Much of this is due to the challenge of having difficult conversations.

If you or someone you love has been diagnosed with mesothelioma, you are already aware that the rare form of cancer has no cure. If you would like information on the benefits of palliative care or any other resources to support you as you face this challenging disease, contact the Patient Advocates at Mesothelioma.net today at 1-800-692-8608.

 

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How AI could improve the quality of end-of-life care

Published in venturebeat.com by Scott Bay

The means to predict mortality using artificial intelligence could be a transformative factor in the future of palliative health care. While this topic may seem a bit morbid, AI has the potential to help medical care providers and doctors significantly improve the delivery of patient care in hospice situations.

Getting the right kind of treatment at the end-of-life stage is more important than many assume. Not enough treatment — or even inaccurate treatment — can provide a painful experience for patients, and overcare may result in hundreds of thousands of dollars in unnecessary medical bills, even if the patient is covered by insurance. While it’s crucial to select the proper medical coverage that includes hospice care regardless of the situation — especially for people over 65 or older, because there are specific plans for specific purposes to help with these medical costs — AI advances may help patients and physicians determine illness sooner to prepare for end-of-life costs and treatments before it’s too late.

A recent study in the journal NPJ Digital Medicine shows that technology will soon allow physicians to improve the timing and delivery of patient care. Researchers used AI to scan electronic health records (EHR) and notes doctors left in patient records to detect potential clinical problems and health risks. The AI system predicted patient mortality rate and final diagnoses more accurately and quickly than physicians. So how does it work?

Using deep learning for patient insight

In the NPJ study, researchers fed almost 48 billion data points (including doctors’ patient notes, patient demographics, procedures, medications, lab results, and vital signs) into a deep learning model. This model analyzed the data and predicted, with 90 percent accuracy, medical issues like mortality rates, longer hospital stay lengths, unplanned readmissions, and patients’ final diagnoses. When compared to traditional predictive models, the deep learning model was more accurate and scalable.

For example, a woman in the final stages of breast cancer came to a city hospital with fluid already in her lungs. Two doctors reviewed her case, and she received a radiology scan. The hospital’s traditional predictive model reviewed her chart and estimated there was a 9.3 percent chance she would die in-hospital. A new type of algorithm (created by Google) reviewed the woman’s chart — about 175,639 data points — and estimated her death risk at an actual 19.9 percent. The patient passed away in a matter of days, proving the algorithm model to be more accurate.

Compared to the traditional method, the deep learning model was 10 percent more accurate. The system’s ability to sift through data that was previously unavailable helped it provide a more accurate mortality estimation. Rather than looking at a few risk factors, the model looks at the patient’s entire electronic health record (EHR), including notes buried deep in PDFs or scribbled on old charts. Using this process, in the future, may enable doctors to save lives and provide better patient care.

Saving lives and money

So what can we do with this information? With more accurate predictions of a patient’s mortality, hospitals and doctors can use better estimations to adjust treatment plans, prioritize patient care, and predict negative outcomes before they occur. In addition to this, health care workers wouldn’t have to spend as much time manipulating patient data into a standardized, legible format.

For example, a report by Futurism notes that Ultromics, an AI diagnostics system developed in England, can diagnose heart disease more accurately than doctors. The same report notes that a startup bot called Optellum is working on an AI system that can diagnose lung cancer by analyzing clumps of cells found in scans. This bot shows promise to diagnose 4,000 additional lung cancer cases per year and at an earlier rate than doctors are currently capable of diagnosing.

Not only can these AI diagnostics systems save lives, but they can also help hospitals save money. In an interview for Futurism‘s report, Timor Kadir, Optellum’s chief science and technology officer, stated that the AI system could cut health care industry costs by $13.5 billion. Sir John Bell, chair of the U.K.’s Office for Strategic Coordination of Health Research, added, “There is about $2.97 billion spent on pathology services in the National Health Service. You may be able to reduce that by 50 percent.”

Predicting death for better care

Current research shows that less than half of the eight percent of patients who need palliative care actually receive it. There are times when doctors make inaccurate or overly optimistic prognoses about a patient. Dr. Kenneth Jung, a research scientist at Stanford University School of Medicine, told NBC, “Doctors may not make the referral [for palliative care] simply because they’re so focused on managing their patients’ health issues that palliative care doesn’t cross their minds.”

Failing to identify patients who need palliative care can have devastating consequences. If the patient’s health suddenly declines, they may spend their final days receiving aggressive medical treatments in hopes of extending their lives by a few weeks. However, studies have shown that approximately 80 percent of Americans would prefer to die at home, rather than in a hospital. Sadly, the report also notes that 60 percent of these people die in acute care hospitals.

It’s in these cases that AI can help identify patients who are critically ill and might benefit from end-of-life care. Early identification of these patients can help them get the treatment they need sooner. And it may allow patients to remain at home, instead of in the hospital, during their final days.

While some may wonder about the future of AI in health care, the purpose of AI systems is to play a supporting role in the health care industry. These systems will serve as a powerful tool that will help physicians and other health care professionals provide higher quality care and offer palliative treatments in a timely manner.

Scott Bay is a writer who covers AI and Internet of Things for PC Mag, Wired, and Men’s Health.

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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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