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.
How to take the worry out of providing long-distance care to seniors
Photo by Pexels
Are you taking up the role of caregiver for a parent or older loved one? Wondering how to provide that care when you live far away? Long-distance caregiving doesn’t have to be so stressful if you take care of the following essential steps.
Get Familiar with Your Loved One’s Medicare Options
The number one concern for seniors is their health, and the number one source of senior healthcare coverage is Medicare. If you are providing care for a loved one from afar, you need to spend some time making sure they have the best Medicare coverage for their situation. Learn the pros and cons of coverage and supplemental plans, as well as important deadlines.
Primarily, you both should know that the Annual Election Period for coverage started on October 15, and you have until December 7 to help your family member make their choices. This crucial enrollment period is the only time you can make changes to current plans, and the deadline is fast approaching, so sit down with a checklist so you can go over all the options in detail. Pick a time when you can visit in-person so that you can have your family member’s Medicare card, copies of the previous year’s medical bills, and a list of any pertinent healthcare information (provider names, prescriptions, etc.). If you can’t do this in-person, use a video call service to connect and have your loved one show or scan you copies of needed materials.
Make Sure Your Family Member Is Safe at Home
Did you know that falls send more seniors to the hospital than any other injury? More importantly, most serious falls happen at home when seniors live on their own. This statistic is not meant to make you feel guilty, but rather to stress the importance of making sure your loved one’s home is free of any fall hazards, both inside and out. If you can make a trip, take a walk around your loved one’s home and look out for issues that could cause them to slip or trip. Clutter can be a recipe for disaster, so make sure any random objects are safely stowed off the floor and out of the path of your family member.
Bathrooms are another sore spot in senior homes, so you may want to help your loved one make changes, such as installing grab bars or putting a seat in the shower. When you need to make these upgrades from afar, you’ll need to find a contractor you can trust. Check reviews online, or ask friends for referrals, so you can find reliable, affordable help to assist your senior loved one with these projects, as well as future issues they may have in their home.
Stay in Touch with a Local Network of Help
When you are providing care from a distance, there will likely come a day when your loved one will need some help and you may not be immediately available to assist them. This is why it is important to build rapport with any neighbors, friends, or community members who may be able to help your family member in their time of need. It’s a major step in effectively providing care for loved ones without adding more stress to your life.
Don’t be afraid to ask neighbors to check in with your parent or loved one, or at least let you know if there is cause for concern. This may include severe weather, odd behavior, or anything else out of the ordinary. Your network can help your loved one get prepared for emergencies, get help when needed, or simply connect with you. As an added layer of protection and connection, look into medical alert services for your parent as well.
Providing care to a senior loved one, when you do not live nearby, can be nerve-wracking. But if you can do some planning, connect with locals, and find ways to keep them safe at home, you can take a lot of the guesswork out of being an effective long-distance caregiver.
Hospice month celebrates success of nation’s first coordinated care model
Published in The Hill by Edo Banach, Opinion Contributor
While there’s no shortage of partisan disagreements on Capitol Hill, one hopes the combative environment that’s become the norm in Washington might take a brief pause now that midterm elections are behind us. At a time when unity and common ground are sorely needed in our politics and our policymaking, one health care program stands out as a reminder of how bipartisanship works at its best: the Medicare Hospice Benefit.
This extraordinary policy achievement was made possible by lawmakers who put aside their differences in the interest of the Americans they served. Enacted as a demonstration in 1978 and a Medicare benefit in 1982, hospice programs have served millions of Americans and their families with compassionate care to relieve pain, manage symptoms, supported beneficiaries and their family caregivers, and provided bereavement services for individuals following the death of a loved one. The benefit has been invaluable to patients and lifesaving for families. And it never would have happened without lawmakers who were committed to the concept, and to working together.
Democrats, including Sens. John Glenn (Ohio) and Bill Bradley (N.J.), joined with Republican senators like Bob Dole (Kan.) and Chuck Grassley(Iowa) to pass what then-Rep. Leon Panetta (D-Calif.) called a “political miracle.” Sen. John Heinz (R-Pa.) personally collected commitments from 68 senators to pass the Heinz-Dole-Packwood amendment to provide hospice services to terminally ill Medicare patients.
Not only did this bipartisan act show how a diverse group of legislators could come together for the good of the country but the hospice benefit itself has become an example of how our fragmented health care system can – and should – work together for the betterment of patients. As America’s original coordinated care model, hospice brings together a multidisciplinary team of providers to meet all aspects of a dying patient’s physical, spiritual and emotional needs. No other health care sector is required to address all aspects of a patient’s, and their family’s, health and wellbeing.
Those elected to serve in the upcoming Congress should know that hospice is a program that works and a Medicare benefit that matters to their constituents. As seasoned and novice legislators alike consider health policy reforms, they should look to the success of the hospice model as an example of preserving what works, and help expand access to comprehensive, coordinated care and person- and family- centered care to all patients with serious, advanced and life-limiting illness. We should also reinforce the foundation of hospice to ensure access, choice and quality care at the end of life.
Hospice is not only best for patients at the end of life, it is also good for the Medicare program. Study after study show hospice care improves quality of life, delivers on patient and family satisfaction and reduces unnecessary costs for Medicare beneficiaries at the end of life. Thirty-plus years later, hospice is a reminder that there are policy solutions that work for both sides of the aisle and across our nation for all Americans. The fruits of cooperation live on today in a Medicare benefit that serves 1.43 million Americans annually.
It’s sometimes unclear if the dust will ever settle in Washington, and if we’ll ever get back to a place of collegiality and bipartisanship in Congress. If our nation’s remarkable hospice benefit is any indication, great things can certainly happen if it does.
Edo Banach is President and CEO of the National Hospice and Palliative Care Organization (NHPCO).
NHPCO Highlights Importance of Hospice in Healthcare Since 70s
November begins National Hospice & Palliative Care Month. National Hospice & Palliative Care Organization (NHPCO) writes that hat began as primarily a volunteer-driven, grassroots movement in the 1970’s, is now an integrated part of our nation’s health care delivery system that provides care to more than 1.43 million Medicare beneficiaries and their families every year.
“Enacted as a demonstration in 1978 and a Medicare benefit in 1982 as our nation’s first coordinated care model, hospice programs have served millions of Americans and their families with compassionate care to relieve pain, manage symptoms, support patients and their family caregivers, and provided bereavement services for individuals following the death of a loved one,” said Edo Banach, president and CEO of NHPCO. “The benefit has been invaluable to patients and lifesaving for families.”
NHPCO offers a snapshot of hospice care with representative statistics from the current edition of its report, Facts and Figures: Hospice Care in America (PDF):
- 48 percent of Medicare decedents were enrolled in hospice at the time of death (in 2016).
- Median length of service was 24 days.
- 5 percent of patients received care for 90 days or less, while those receiving care for more than 180 days accounted for 13.6 percent.
- Cancer was the most common principle diagnosis, accounting for 27.2 percent of patients; increasing among the patient populations is a diagnosis of Alzheimer’s or dementia which accounts for 18 percent.
- 98 percent of care was provided at the Routine Home Care level with 55.6 percent of RHC days taking place in the home.
NHPCO provides a valuable abundance of resources with data and statistics on hospice. The organization is integral to a broad spectrum of efforts in leading the public’s understanding of hospice and palliative care and advancing the ever more vital role of hospice across the healthcare industry.
In addition, this month honors the home care and hospice community including the millions of nurses, home care aides, therapists, and social workers who make a remarkable difference for the patients and families they serve.
- In 2018, home care providers will travel about 8 billion miles to deliver the best health care in the world’
- Ninety percent of Americans want to age in place, and home care is the preferred method of health care delivery among the disabled, elderly, and chronically ill; and
- Home care provides high-quality, compassionate care to more than 5 million Americans annually.
As we approach the giving season, November is the perfect time to recognize their efforts.
Financial planning and Medicare
By Steven Merrell, Financial Planning: Let’s talk Medicare
If you are one of the 44 million Americans currently covered by Medicare, you probably know that Medicare’s annual open enrollment period just started. Between now and Dec. 7, you have the opportunity to make adjustments to your Medicare coverage.
Paying for health care is one of the biggest financial challenges many people face in retirement. If you are 65 or older, Medicare is probably an important part of your financial picture. However, if you are new to Medicare, you may be surprised by Medicare’s complexity and the gaps in your coverage.
You can choose between two general directions for your Medicare coverage: Original Medicare and Medicare Advantage plans. Original Medicare, in turn, is divided into two parts. Part A covers inpatient hospital care, skilled nursing facilities (when medically necessary), hospice care and home health care. Part B covers doctor visits and outpatient care and other medically necessary services like ambulance services, clinical research and durable medical equipment. Optional Part D covers prescription drugs and is purchased from private insurance companies.
Original Medicare does not cover everything. For example, while Part A covers hospitalization and skilled nursing facilities, it only covers acute care. If you need long-term care, also known as custodial care, Medicare will not cover it. Medicare also excludes most dental care, eye exams for prescription glasses, dentures, hearing aids and exams for fitting them, acupuncture and routine foot care. If you want to find out if your particular need is covered by Original Medicare, you can search for your item or service on the Medicare coverage website: www.medicare.gov/coverage.
Most people do not pay a premium for Part A, but they do pay a deductible of $1,340 for each benefit period and coinsurance for hospitalization. Part B premiums start at $134 per month but can be higher depending on your income. In addition, for Part B you will pay a deductible of $183 per year and coinsurance above that amount equal to 20 percent of the Medicare-approved charge for most doctor services, including the services provided by your doctors while you are in the hospital.
In a catastrophic scenario, there is no limit to the amount you can owe under Original Medicare. Consequently, many people purchase a supplemental policy, also known as Medigap insurance. Medigap insurance is issued by private companies, but the policies are standardized by law to comply with Medicare requirements. There are 10 standard Medigap policies available each with different coverage limits.
If you find this confusing, you are not alone. In fact, this confusion is why Medicare Advantage plans have become so popular in recent years. By law, Medicare Advantage plans are required to provide everything that is covered by Original Medicare. The only exception is hospice care, which continues to be provided by Original Medicare Part A.
Steven C. Merrell is an investment adviser and partner at Monterey Private Wealth Inc. in Monterey, CA.
5 advantages of early election of hospice benefits in assisted living and skilled nursing
Published in McKnight’s Senior Living by Rhea Go-Coloma, LMSW
For many, hospice care is associated with care received in the home. When provided early enough for residents in assisted living facilities and nursing homes, however, hospice care can provide important benefits for the resident and facility operator alike.
Hospice care, which is covered by Medicare and most private health insurance plans, eases pain and alleviates discomfort when a resident’s illness no longer is responding to treatment.
In fact, about one-third of assisted living residents receive end-of-life care at the community they have made their home. When residents become terminally ill, however, operators must provide care that may go beyond their capabilities.
When this happens, residents may be better served in a hospital or nursing home setting, but frequently it’s in the best interests of the resident to remain in the assisted living community. This is largely because residents have grown accustomed to the people and environment and feel the most at home.
When an assisted living community resident opts for hospice care, he or she also may be able to remain in the facility during the last months of life. This is best achieved when the assisted living community operator partners with an outside hospice provider. In this situation, it’s important for both organizations to work closely together to provide the best possible care for the resident.
Whether the hospice care is being provided in an assisted living community or nursing home, good communication between the family, staff, hospice staff and caregivers is important. Equally critical for success is early adoption of hospice care.
Early adoption of hospice makes all the difference
When adopted early, hospice care offers significant benefits for residents and families. Significantly, hospice healthcare specialists help residents and their families prioritize wishes and goals, creating a greater sense of ease and comfort.
Team-oriented hospice healthcare specialists work with the staff members of the assisted living community or nursing home to coordinate and plan care. Here’s a look at the five most important advantages of early election of hospice care for residents, families and facilities striving to meet the needs of these individuals:
Family support. Early involvement of an interdisciplinary team of hospice specialists helps families on many fronts: teaching family members how to care for the person who is ill, providing support and counseling to family and friends, offering education about the care process.
The hospice team also is there to help families clarify patient wishes, establish physician and patient relationships and balance family dynamics during this stressful time. Bottom line: hospice provides a way for residents to have a diverse group of committed professionals advocating for their needs.
Care goals. Hospice gives families the time they need to discuss goals of care, including an advance directive, a legal document that spells out end-of-life care ahead of time. The hospice team — including doctors, nurses, therapists, healthcare aides, clergy and social workers — addresses every aspect of a resident’s illness, with emphasis on controlling and reducing pain and discomfort. Team members provide symptom management and pain relief, increase quality of life and relieve patient suffering.
Family counseling. Guidance and support are a crucial feature of hospice, helping families deal with the range of emotions that surround this difficult time, offering guidance from social workers and chaplains. Hospice also offers bereavement and grief counseling after a loved one has passed, and it helps with some of the after-death tasks that need to be completed. Ultimately, choosing hospice care early makes end-of-life a calming and successful experience during a difficult time.
Dignity for the resident. Hospice offers the resident a chance to die with dignity. Hospice patients are not hooked up to loud machines, their vital signs are not constantly checked by medical personnel and they do not undergo invasive procedures to prolong life. It’s about respecting patient wishes.
By making arrangement to provide hospice care, operators of assisted living communities and nursing homes can make it possible for residents and families to focus on spending time with their loved one and not dealing with the red tape and medical procedures associated with hospital care.
Suggestions for adult children caring for aging parents
Published in OA Online By Raylene Weaver, LPC of Centers for Children and Families
The Beatles will always be one of my favorite groups. One of their songs that has hit home with me while thinking about this particular article is, “When I’m Sixty-four”.
People want to be needed and appreciated especially when approaching a time in life when it’s easy to be disregarded or forgotten. The aging process can be stressful, causing some to suffer anxiousness and sadness. Several of my clients and friends have faced or are facing tough decisions that are affecting their parents and themselves. I would like to pass on a few suggestions regarding the physical, emotional, mental and financial aspects of AGING that might alleviate some of the stress that can definitely arise for all concerned.
A…ASK parents specific questions concerning their health. Do family members know their medical history, names of their doctors, any medications they might be taking or appointments they are scheduled on a regular basis? If on Medicaid or Medicare, do they also carry supplemental insurance? Are all financial papers, investments, bank account information, bill payment procedures, updated will, computer passwords and any other important documents or information easily accessible? Do they have a bereavement plan?
G…GUILTY feelings about wanting to be prepared by creating a plan for a parent’s future? Questions concerning the private aspects of their lives might seem like prying but this can hopefully be of some consolation for parents, knowing that they will be taken care of “when the time comes”. The objective for the children is to be “in the know” not to be “nosey”.
I…INDEPENDENT lifestyle is what one wants for aging parents. Parents hope to be independent for as long as possible. They want to continue to travel, take care of their own bills, shop, visit friends and attend worship services. Children sometimes become too “helpful” when parents are capable of handling chores and projects and making decisions for their future. Parents do need family members visiting and checking in on them, showing care and concern, just not insisting on control.
N…NECESSARY intervention will be inevitable for many parents. Knowing when to step in and offer the appropriate type of care and assistance can be stressful. Emotions will surface that might not have been seen or experienced before. When going thru matters for instance, pertaining to insisting a parent not drive any longer, taking over their physical and financial aspects of daily life or ultimately moving them into a facility for mental or physical issues or children becoming caretakers of parents in their own homes, professional agencies might be considered. Seeking assistance from those in the medical field, state/local agencies and counseling professionals might become necessary. But until this time arises…
G…GIVE the gift of respect, love and kindness to parents. They are experiencing and living life to the best of their abilities like their children. One article I came across by Evan H Farr, “What Aging Parents Really Want from Their Adult Children”, stated that adult children should: 1) make suggestions instead of giving orders, 2) pick your battles about what parents can and cannot do, 3) reframe, don’t blame and 4) stop and think how you would want to be treated.
So I guess that brings me back to the Beatles. A couple of the lines from Paul and John’s song says, “Will you still need me, will you still feed, me when I’m sixty-four?” Can I just ask…when I’m 74, 84, 94?
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.
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:
- What matters most to me (examples: being at home, going to church, playing with my grandchildren).
- My important future life milestones (examples: my 30th wedding anniversary, my grandson’s graduation, birth of my granddaughter).
- This is how we prefer to handle bad news in my family (examples: we talk openly, we shield the children, we do not like to talk about it).
- This is how we make medical decisions in our family (examples: I make the decision myself, my entire family has to agree on major decisions, my daughter who is a nurse makes the decisions).
- Other information about my values or end-of-life wishes I want you to know about.
“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.
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.