Palliative Care

Advanced, palliative care plans important part of life


Published in Cleveland Jewish News by Becky Raspe

It’s best to be prepared in every situation, especially when it’s health-related.
According to Rabbi Akiva Feinstein, director of spiritual care at Montefiore in Beachwood, and Dr. Beth McLaughlin, chief medical officer at Hospice of the Western Reserve in Cleveland, creating a plan for advanced and palliative care makes decisions easier.

“Advanced care planning is important because any of us can have a major life change at any time,” McLaughlin stated. “It’s nice to have family and loved ones know what your wishes would be in that situation.”
Feinstein noted during one’s health journey, there are a lot of choices but the medical system is “not always good at pointing out the forks in the road.”

“Most times, patients are pushed towards more treatment and more surgery, and that approach is fine for some,” he said. “But, most people get to the point where they’ve endured a lot of difficult decisions. But with planning, as one learns about the disease and prognosis, it’s important to ask your healthcare provider about what you can do and your choices.

He added, “The plan isn’t always so much about what you’re going to do, but what you want and how people can help you get that along the way.” McLaughlin said advanced and palliative care planning has two components – completing legal documents, then communicating your wishes to family members.

“Both are important to do,” she explained. “Advanced care planning is anything you do ahead of time to plan for future health. There are resources online to help guide a conversation with family, like general things to talk about. And then, there are legal documents that are recognized in the state of Ohio like the living will, the health care power of attorney and the DNR form.” Since an individual can’t expect to make decisions about their health in real time during a crisis, preparation is important. Feinstein said plans begin with appointing a healthcare proxy.

“They can listen to your wishes and make those decisions for you when you can’t anymore,” he said. “The subsequent stuff is working with your doctor on what he or she thinks about what could happen and what their goals are with the treatment.” Feinstein said the last part of the process is discussing hospice.

“Many people don’t understand what hospice is,” he noted. “They think it’s either much worse than it is or they can’t perceive it as relevant at all. In America, understanding you do have an option and choices helps you make better medical decisions along the way.” McLaughlin said there is merit in involving the family in the planning process. “If something happens, the person who is making these decisions and plans isn’t going to usually be able to explain what their wishes are at that time,” she explained. “So, it’s important for the family to know what their wishes are. When that happens, the medical team will turn to the family for decisions.”
Feinstein added if the family can’t be involved, it’s critical to confide in someone.

“Culturally, I find that some families make decisions as collective groups,” he said. “But some people value autonomy. The main thing is finding a person you can go through the process with. Sometimes, it’s having that sounding board when you get information from doctors and make those decisions together.”

Though it’s best to make plans, Feinstein said many families don’t plan for crises. “They usually end up in the midst of a serious illness and suddenly wake up one day and realize they can’t do it,” he noted. “The typical family always find out they need to plan when it’s too late. It’s not about making people plan when it’s difficult. It’s about thinking about their values when it matters most.” But McLaughlin said even starting a plan can reduce a bit of the stress that comes along with medical crises.

Anytime someone is dying, it is very stressful and sad,” she explained. “There are often lots of medical decisions that have to be made. That is very overwhelming. It’s helpful to have these plans in place. It takes one bit of confusion and stress out of the equation.”

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Learning Has Shaped Oncology Nurse’s View of Patient Care

Published in oncnursingnews.com by Jean Sellers, MSN, RN

There is an old proverb I’ve heard many times, attributed to several sources: “When the student is ready, the teacher will appear.” Although I was anything but ready to face the concepts of death and dying, in 1990, my teacher appeared. He was 59 years old and presented to the emergency department with sudden onset nausea and vomiting, along with a severe headache. I vividly remember standing outside the thin curtain separating his stretcher from where I stood, dumbfounded, as the doctor introduced the words “temporal mass” and “cerebral edema” into my life.

I wasn’t a nurse then. I was a mother to 2 young girls, and I was not prepared to take care of the man behind the curtain. He was the greatest man I had ever known, the same man whom I would forever refer to as my first patient. My father. His diagnosis was an aggressive glioblastoma, and he lived 9 months from that day. I was forced into a crash course on surgery, radiation therapy, and end-of-life care. His final 2 months were spent in my home. The man who defined a “good day” as 18 holes on a golf course was now confined to a hospital bed in my guest bedroom, wearing diapers.

My family came together with the best of intentions, but we never quite had the conversations we needed to have. Some family members refused to acknowledge he was dying, and others viewed hospice care as giving up. Some did not want to treat his pain with narcotics for fear he would become addicted. I was desperate to find anyone who could help me ensure that my father would not suffer, which finally led me to call the hospice answering service—and brought another teacher in to my life.

The hospice nurse returned my call later that evening. Nothing could have prepared me for the way it felt to feel so completely heard and understood in the midst of that terrifying time. She listened to my concerns, fears, and confusion. She became my lifeline and helped my family to have the difficult conversations exploring what a “good death” could look like and what my father would want.

These lessons started me on the path I still walk today, that of an oncology nurse who advocates for quality cancer care throughout the healthcare continuum. Caring for my father opened my eyes to what was missing and I believe is still lacking today: effective palliative care.

Palliative care addresses not only symptom management but also the emotional devastation that affects both patients and their families. Today, research shows that when palliative care is integrated earlier in the disease process, outcomes improve.1 Our ability to achieve better outcomes lies in how we engage in difficult conversations. This includes an understanding of what quality of life is and, most importantly, what it means to the patient.

Nursing continues to be ranked as the most trusted profession. It should not be a surprise, as many of us are able to share a sacred space the moment we enter into the darkness with our patients. Having difficult conversations is more effective when empathy is included. Theresa Wiseman, RGN, BSc(Hons) Psych, RCNT, RNT, PGDE, a nursing researcher and scholar at the University of Southampton in the United Kingdom, says that although providing empathy is not always easy, it is a skill that can be mastered.2 It requires that we:

1. See the world as others see it
2. Be nonjudgmental
3. Understand another person’s feelings
4. Communicate understanding of what was shared

Brene Brown, PhD, LMSW, a research professor at the University of Houston Graduate School of Social Work, says empathy reminds us that we are not alone. Her research focuses on authentic leadership and the healing power of listening while allowing someone to feel they are truly heard and valued. She speaks to the basic elements of what we need to master if we, as nurses and human beings, hope to provide compassionate, empathetic care. Understanding our own vulnerabilities is a critical first step.3 Our ability to foster difficult conversations can be instrumental to breaking through feelings of isolation and loneliness that our patients and families face. This can be hard work. By acknowledging the difficulty, we take the first step toward meeting them where they are.

We may not always be ready when our teachers appear. However, I have found that when I seek to learn and enhance my ability to be there for others, I’m surrounded by many experts. I’ve lost count of the number of teachers I have been grateful to meet along the way. My teachers include nursing colleagues, physicians, researchers, and especially patients who have trusted me with their deepest thoughts. I use every opportunity I can now to urge nurses to always remember the reasons they chose this career and to remember their teachers. I urge them to never stop learning.

Jean Sellers is an administrative clinical director at UNC Lineberger Comprehensive Cancer Center in Chapel Hill, North Carolina.

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How to Choose Hospice Care

Important questions to consider before you arrive at a decision

Published in NextAvenue By Liz Seegert

Part of the LIVING TO THE END OF LIFE SPECIAL REPORT

(Editor’s note: This story is part of a special report for The John A. Hartford Foundation.)

Making the decision to transition your loved one to hospice care (for people whose medical conditions mean they are expected to die within six months) is a time of emotional upheaval. It’s often accompanied by confusion, with little understanding of available options or how hospice actually works.

Knowing ahead of time which hospice services are available and the tasks you may be required to take on can help you make the right choices when decision time comes.

Home Hospice, Hospital-Based Care or Stand-Alone Facility

One of the first things you will need to decide is whether to use a home hospice service, hospital-based care or — if available — a stand-alone facility. Nursing homes may also have hospice units or hospice floors.

There are advantages and disadvantages to each, according to Gilbert Oakley, a hospice nurse with Visiting Nurse Service of New York, who’s been providing home hospice care for over a decade.

You’ll have to balance what the person who is dying wants versus what you and the family can realistically provide.

If opting for in-home hospice, a home hospice agency will work with you to determine whether an adequate support system exists. Can the family pitch in with necessary tasks — from administering pain medication to bathing to helping the person toilet? Are you financially prepared to pay for additional help beyond what insurance covers?

Medicare-reimbursed hospices (for people 65 and older) all provide the same basic services. However, there still may be differences between providers that might make one a better choice for you over another, according to the Hospice Foundation of America. The best way to know is to compare. Medicare’s Hospice Compare provides lists and ratings of hospice providers in your community.

Your loved one’s physician, hospital discharge planner or social worker can recommend specific hospice agencies or facilities. Geriatric care managers can also be a good resource. Often a physician has privileges at certain facilities, which may limit choices. Ask these experts questions about their experiences working with the agencies or facilities. Then contact a few for informational appointments.

Hospice Questions to Think About

Credit: Adobe Stock

Many of the questions are the same whether you opt for in-home hospice or facility care. Here are some important questions to consider:

Is the hospice Medicare certified? Most are, and are therefore required to follow Medicare rules and regulations. This is important if your loved one receives the Medicare home hospice benefit.

Is the hospice nationally accredited?  This designation lets you know that the agency or facility meets certain quality standards. While accreditation isn’t required, it can be a clue to the agency’s commitment to quality.

Has the facility or agency been cited in a negative way in the last few years by a state or federal oversight agency? Find out whether any violations or deficiencies been corrected.

Are the hospice’s doctors and nurses certified in palliative care (providing relief from the symptoms and stress of a serious illness)? Experience counts for a lot, but having the credential indicates specialized study in palliative medicine and/or nursing.

How quickly is a plan of care developed for the individual? Some hospices can begin the admissions process and start hospice services within a few hours — even at night or on weekends. Others may only provide intake during normal business hours. Depending on your loved one’s situation, a hospice’s ability to start services quickly might be very important.

How often will a nurse visit my loved one? Medicare only requires one visit every 14 days, but your family member may need more support, according to Perry Farmer, CEO of Crossroads Hospice, a for-profit provider. Find out the answer to this: How often do social workers, care aides, clergy, volunteers or bereavement support counselors come?

What are the options for inpatient care? Patients being cared for at home at some point may need to go to an inpatient unit for management of complicated symptoms or to give their family respite. Facilities vary — from the hospice having its own private inpatient unit to leased beds in a hospital or nursing home. If possible, visit the facilities (or delegate the task to a trusted family friend) to ensure that they are conveniently located and that you are comfortable with what they offer.

How rapid is crisis response? You want to know who would be available after normal business hours, on weekends and holidays. Ask about the hospice’s average response time and who will make the visit. Some hospices offer limited in-home support on nights and weekends, while others are able to send staff out to a patient’s home no matter when a crisis arises.

What are the expectations for the family’s role in caregiving? See whether the hospice’s expectations are consistent with what the family can provide. Often the care partner has no idea what it’s going to take to be with someone as they die at home — administering medication, helping with bathing and toileting and more. Will the hospice provide training to family caregivers?

How quickly can we expect pain and/or symptoms to be managed? Pain management is a key part of hospice care. Ask about the process if medications don’t seem to sufficiently address pain or symptoms, and how quickly they can be adjusted.

What out-of-pocket expenses should the family anticipate? Original Medicare’s hospice benefit covers everything needed related to the terminal illness, from doctor and nursing care to short term respite and grief counseling. This is true even if the individual chooses to also remain in a Medicare Advantage Plan or other Medicare health plan. There may be a small co-pay for some services like respite care. Medigap and Part D prescription drug plans pay for other care and certain medications.

Taking this all into a account, having a plan of care is vital, according to Oakley. The caretaker(s) need to be aware of what the hospice can or cannot provide and what you or other family members must do.

If your loved one is a veteran, it’s important to select a hospice with the necessary, appropriate experience. Next Avenue published a story detailing how the toll of war on veterans can complicate end-of-life care and present unique needs that must be addressed. You may want to check out the We Honor Veterans program which works with experienced providers of this type of care.

Oakley also recommends finding out how the hospice handles patient and family concerns. Is there a clear process for sharing issues with appropriate hospice staff and ensuring the concerns are addressed, including a process for escalation if the concern is not adequately resolved at lower levels?

Facility-Based Care or Hospice Houses

There are times when patients with very complex symptoms or conditions cannot be cared for at home. Sometimes family members are geographically distant or just don’t have the emotional or physical resources to deal with the situation on a day-to-day basis.

One alternative is a freestanding facility known as a hospice house. Hospice houses offer a more home-like atmosphere than typically found in a hospital or nursing home. They’re designed for short stays and may be a good option when the person requires around-the-clock care. Some hospice house programs mandate that a patient be within a month or two of death, so be sure to ask about admission criteria.

“If you have an opportunity to go with a free-standing hospice house, jump wholeheartedly into it because the environment is created specifically to help people as they die and the family members of people as they die,” said Dr. Rebecca Allen, a geropsychologist and professor of psychology at the University of Alabama’s Research Institute on Aging.

Bereavement Support

Allen recommends asking all hospices about available bereavement services. Grief support can vary widely. It may include individual counseling, support groups, educational materials and outreach letters. If you opt for individual or group support, find out what credentials the session leader has.

What’s Most Important

Think about your general impressions after the initial contact with the provider. What was your reaction to the people you spoke with?

Remember to focus on what is most important to your family — most importantly the person who is dying.

Keeping that at the center will help narrow the field, whether there are three options or 30.

New York-based journalist Liz Seegert has spent more than 30 years reporting and writing about health and general news topics for print, digital and broadcast media. Her primary beats currently include aging, boomers, social determinants of health and health policy. She is topic editor on aging for the Association of Health Care Journalists. Her work has appeared in numerous media outlets, including Consumer Reports, AARP.com, Medical Economics, The Los Angeles Times and The Hartford Courant.

 

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How AI can improve end-of-life care

Published in Stanford Medicine’s SCOPE by Amy Jeter Hansen

It’s hard to wrap your brain around. It’s hard to even type these words, but here they are: it’s useful for physicians to be able to predict when a patient will die.

Photo by Edward Caldwell

Don’t misunderstand. It’s not about playing God or acting nefarious. It’s about doctors being able to help patients die on their own terms, as comfortably as possible, having received the best, most appropriate care.

In the new issue of Stanford Medicine magazine, writer Kris Newby describes a Stanford pilot program that marries technology and compassion, artificial intelligence and palliative care, with the aim of helping doctors better understand which patients could benefit from end-of-life conversations while there is still time.

In the article, palliative care physician Stephanie Harman, MD, tells Newby:

Ideally with this AI model, we’re identifying patients who are sicker than we realize… And it gives us an excuse to say, ‘It’d be great if we could talk about advanced care planning.’ Or, ‘Have you had a discussion with your regular doctor about what matters most to you if and when you get sicker?’ I think the twist is that we’re using machine learning to add more to a patient’s care without taking anything away.

Developed by Nigam Shah, MBBS, PhD, the model uses an algorithm to calculate the probability that a patient will die within the next 12 months, based on comparisons of the past year of the patient’s medical history with records of millions of other patients. Many factors are considered, including the number of hospital admissions, disease classification codes and prescription codes.

The tool provides Harman with a daily report of newly-admitted hospital patients who have a 90 percent or higher probability of dying in three to 12 months. Harman reviews the medical records to decide if the patients have palliative care needs. “She’s found the list to be helpful,” the article explains, “and she sees how it can improve hospital care and enable her to spend more time with the most critical patients.”

This is important because, as the article notes, less than half of admitted hospital patients who need palliative care actually receive it. And many more people would want to die at home than actually do.

Hopefully, tools like this will help.

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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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Healthcare services, policies for end of life misunderstood says hospice leader

Reform burdensome Medicare regulations to improve end-of-life care

Published in The Hill By Norman McRae, opinion contributor – The views expressed by contributors are their own and not the view of The Hill

Research shows that more than a quarter of Americans have given little to no thought about how they want to die – or how they prefer to be cared for in their final days. As a hospice care provider for more than 32 years, sadly, this is not a surprise to me.

What too many don’t realize is that with heartfelt consideration and careful planning, death can be a profound, peaceful and personal journey. That is why it is so important that patients and their families have timely access to high-quality hospice care.

Given how warily our culture approaches death and dying, health care services and policies surrounding the end of life are often misunderstood. At the expense of comfort, precious time and countless dollars are spent chasing an elusive cure rather than approaching an end of life illness with peace and reflection.

Hospice care provides a holistic experience that focuses on the wishes and needs of the individual. The hospice model involves an interdisciplinary, team-oriented approach to treatment that includes expert medical care and comprehensive pain management but also includes emotional and spiritual support for the patient AND their family. It’s this philosophy that drew me to this field and what I and our team at Caris continue to practice and uphold today.

For more than 35 years, the Medicare Hospice Benefit has ensured older Americans at the end of life could access this philosophy of care. As Medicare’s original coordinated care model, hospice is a program that works.

While those in the hospice community have grown and adapted to meet the needs of those we serve these last 30-plus years, many of the regulations imposed on the Medicare Hospice Benefit are still outdated relics of the 1980s. Thankfully, members of Congress recognize the need to modernize and changes are on the horizon. We welcome updates to burdensome regulations that will improve the delivery of patient care, including the reduction of existing requirements that create needless and time-consuming administrative work for hospice programs. One positive example of this recently discussed on Capitol Hill is the Center for Medicare & Medicaid Services’ (CMS) proposed rule to give more flexibility to physician assistants to re-certify patients who have been in hospice care for more than 180 days – a change broadly supported by the hospice community. We applaud efforts underway in Congress – including the Ways and Means Committee’s efforts to address and cut red tape in the Medicare program.

Policymakers should also consider reforms to make palliative care more widely available and hospice care available in a more timely fashion. This means that they must ensure that any proposed payment reforms do not threaten the integrity of the Medicare Hospice Benefit and the principles on which hospice care was founded.

During my tenure, I’ve seen plenty of change, and I imagine I’ll see more, maybe even policy changes to the Medicare Hospice Benefit. What all involved must remember is that any changes must compassionately consider protecting timely access to care while making sure that regulations are less rigid, duplicative and costly. Failure to implement commonsense reforms could unintentionally disrupt or delay patients’ access to high-quality end of life hospice care. Any new policies must continue to support the basic human right of quality end of life care and protect the values of hospice, the right of patient choice and the integrity of our care philosophy.

Norman McRae is on the board of the National Hospice and Palliative Care Organization (NHPCO), chair of the Hospice Action Network (HAN) and the founder of Caris Healthcare in Knoxville, Tenn.

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Advance Care Planning: Reminder for YOU to Have the Conversation

By Cozzie M. King, National Coalition for Hospice and Palliative Care

The scenario generally plays out the same. A person becomes ill…too ill to make decisions for themselves…too ill to communicate with the attending medical staff. Nearby family rush to the hospital bedside. The physician explains what’s happening to the family. Things aren’t looking good or the medical terminology is not easy to understand. After some time, the family is left to make decisions for their seriously ill loved one. Decisions that have not been discussed or thought about prior to this point. What do we do? Who has the final say? Things normally go downhill from here. You’ve seen it. I’ve seen it. Medical staff dread it. No one wins. Making healthcare decision at the hospital bedside is not the right time. These conversations need to happen before the crisis, not during.

Speak Up

As a mom, sister, daughter, past and future caregiver, I understand the importance of having conversations about my future healthcare decisions with my family and friends. These conversations can be hard to begin. However, there are many resources, tools and games that help families have these talks in creative ways. Over the years, I have facilitated several talks on how to plan and communicate your future healthcare decisions.  One of my personal favorite resources is the Speak Up video. This video is one of the tools I consistently use when explaining why it’s so important to have the conversation and complete an advance directive.  I encourage you to post and share this video with your family and friends on Facebook. They’ll thank you later. The message is short and simple.  Check it out:

Click to watch NHDD Speak Up Video

As we advocate for more families to participate in advance care planning, keep it simple. I remind my family and friends that advance care planning is much more than completing a form. It really is more about the conversations you have before and after any document is completed.

Lead By Example

April 16th is National Health Care Decisions Day (NHDD) and this year’s theme is, “It always seems too early, until it’s too late.” NHDD is a call to action for EVERYONE to:

→Think about your beliefs and values,
→Write them down,
→Choose a healthcare proxy (someone who speaks for you if you are not able),
→Complete an advance directive, and
→Share with your healthcare proxy, family and doctors.

The purpose of NHDD is to inspire, educate and empower the public and providers about the importance of advance care planning – and most importantly, to encourage people to express their wishes regarding healthcare and for providers and health care organizations to respect those wishes, whatever they may be. As someone in the health care field,  be sure to complete your advance directive and encourage your colleagues and loved ones to do the same. Practice what you preach. Read related story in TMC News

 

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The Other Side of the Conversation

Author: Christopher M. Thompson, MD, HMDC

This article originally was published in Winter 2017 NewsLine.

In this post, a physician connects his personal and professional caregiver roles.

As palliative care providers, we spend our careers talking about end-of-life care and helping families make difficult choices about life and death. Have you ever been on the other side of the conversation, answering questions and making decisions for your own loved ones? I have cared for thousands of patients at the end of life, but recently I’ve been on the other side of that conversation – twice.

My first conversation began with “Momma,” my wife’s 91-year-old paternal grandmother. Her decline started with a kidney stone, which then led to urinary tract infections and tremendous pain. Momma made the decision to have lithotripsy. During the procedure, she had respiratory distress and required intubation. Her heart was not strong enough to tolerate this “routine” procedure. She developed right-sided heart failure and pulmonary edema. Doctors were able to extubate her; however, she continued to have more respiratory distress. She was not doing well. They placed her on Bi-pap but she did not tolerate this. She was in the hospital, agitated, dyspneic, and did not want to be re-intubated.

So now what? Our family had to begin those difficult discussions. Do we continue to push aggressive care? Momma told the family she was tired and ready to die. It was hard for our family to acknowledge what this meant even knowing her wishes. Added to that, it was two weeks before Christmas and my family lived six hours away from Momma. We decided my wife and our three-year-old daughter would travel to Georgia while I stayed home to work. I wanted my wife to be there for the conversation in person and to see her grandmother, as I knew this might be her final days on earth. After discussing options, the family agreed to inpatient hospice care.

I was too involved with work and like many times before chose work over family. My wife was at Momma’s bedside for less than 24 hours when she called me telling me that Momma was asking for me, “The Doctor.” I pulled myself away from work in the middle of the day and headed to Georgia.

I was now being asked medical questions as well as “what about Christmas?”, “what do we tell the great-grandchildren?”, and “is this the right thing to do?” I did not have answers. I had memories and emotions for this woman I loved; I did not want to think, “Momma is dying.”

All the signs were there; it was her time to die. The family began the journey with Momma. I have worked in three different inpatient hospice facilities. It’s easier for me to study the staff, their workflow, their EMR, their census, their medical director – this is what I know. My wife reminded me that this time, I was there for Momma and our family. I was not “The Doctor” now; I was family.

Staff managed Momma’s symptoms quickly and she had two good days talking and interacting. We had made the right choice, albeit not an easy one. Long days and nights at the hospice home wear a family down. Hospice staff participate in these experiences daily. We think how hard it must be for the patients and families. When you are on the other side, you feel the sorrow and you learn a lot about the value of hospice care.

Momma died peacefully four days later. We returned home to North Carolina, only to receive a phone call that “Granny” was in the hospital. Granny was my wife’s 78-year-old maternal grandmother. She had Alzheimer’s disease, had fallen at home, and had developed altered mental status. She was not eating, she had a UTI, and a CT scan showed a small hemorrhage in the frontal lobe. Granny was agitated, not eating, and declining. So now what?

Just three weeks earlier we had lost Momma. Now our family was deciding on inpatient hospice for Granny.
My wife, daughter, and I packed the car and headed for Florida. I took the time from work, but I was still on call and was on the phone, giving orders the entire trip. Once again, it was easier for me to do my work as a hospice physician than confront what I had no control over. We were losing both our grandmothers within three weeks.

As we arrived in the middle of the night, we received a call letting us know Granny died. She had declined quickly. That was truly a blessing. After all the heartbreak and tears, we went to Granny’s house and celebrated her life. This is what she would have wanted.

Those two experiences remind me how hard end-of-life conversations are for families. We as palliative care providers need to remember it is different when there are memories and emotions involved. No matter how informed our families are, these decisions are not easy. And, it’s hard being on the other side. We are no longer medical professionals, we are family. All our medical training leaves our mind and we become an emotional basket case. We find it hard to think straight or make rational decisions. It’s difficult living with the decisions and through those choices.

I’m 40 years old, my parents are approaching retirement, and my grandparents are dying. I have friends who are struggling with acute and chronic illnesses. All of this has made me a better hospice and palliative care physician and I’m glad I can reflect on my training and life experiences to help my patients and families. I make the conversations personal and emotional. I have more empathy during family meetings. I think this adds a new dimension to the work I do, the work I’m proud to do.

These two experiences brought our family closer together and I’m grateful I could help in the decision-making process. My family saw firsthand how our jobs as hospice and palliative care providers are intensely emotional. We all need to realize the impact we have on the families we care for, how a well-trained hospice and palliative care staff can have an impact on a family.

During our trip home from Florida, my wife looked at me and asked, “How do you do this day after day? I am proud of you and now understand your job even more and how rewarding it must be.”

———–

Christopher M. Thompson, MD, HMDC, assisted in developing the palliative medicine programs at two hospitals prior to joining Transitions LifeCare as Medical Director for Transitions Kids, Transitions LifeCare’s pediatric hospice program. Dr. Thompson is board certified in Family Medicine. After completing his Fellowship, Dr. Thompson became board certified in Hospice and Palliative Medicine with the added qualification of Hospice Medical Director Certification.
 

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Spirituality and Patients

Viewpoint

Spirituality is a key dimension of quality palliative care, yet palliative care programs need models of care to integrate spiritual care into standard practice. As with all domains of palliative care, there is also a need to generate evidence supporting clinical practice. This study makes an important contribution to the fields of palliative care and spiritual care by testing a model of outpatient spiritual care and including important patient-centered outcomes.

In their discussion, the study authors acknowledge that other variables might have influenced their findings and that some of the tools they used might be measuring psychosocial factors rather than strictly religious or spiritual ones. However, these overlapping constructs are related to purpose, meaning, comfort, and peace-all of which are associated with quality of life, regardless of the patient’s specific faith or belief system.

Chaplains are the spiritual care specialists within interdisciplinary teams, and their contributions, as well as outcomes of their work, have not been well supported or -studied. The Spiritual-AIM intervention has great potential to guide the training of other chaplains and to help achieve a higher level of care for patients and families.

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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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