Comfort Care

What you can expect from hospice care

Published in considerable.com by Walecia Konrad
This service can bring dignity and grace to the end of life

When Gina Raiford, 54, enrolled her 95 year old grandmother into hospice care two years ago, she was heartbroken. Her grandmother was coping with serious heart failure and had suffered several episodes during which she became non-responsive and needed hospitalization. Eventually hospital staff suggested hospice.

That upset Raiford even more. “You hear the word hospice and you think to yourself, this person is going to die and I don’t want that,” she says. “Worse, you think by agreeing to hospice you’re helping the person die.”

Those feelings are not uncommon, says John Mastrojohn, chief operating officer of the National Hospice and Palliative Care Organization. “Most people don’t fully understand what hospice really means,” he says.

While people’s fears about hospice are understandable, quality hospice care is what many caregivers and health care professionals have come to believe is the most dignified and graceful way to deal with a terminal illness. It can offer physical and emotional support to the entire family, not just the patient. But all too often, patients and caregivers are introduced to the idea of hospice during a time of high emotions, says Mastrojohn. That’s not the best time to make decisions—or do the necessary due diligence to find the highest quality care.

What hospice is—and isn’t
Hospice care is offered to individuals considered to be in the terminal phase of an illness with a life expectancy of six months or less. It doesn’t necessarily take place in a stand-alone facility: Patients may also receive services in a hospital or at home. The goal is to provide the patient with comfort from pain, management of symptoms, and emotional and spiritual support at a time when curative treatment is no longer beneficial.

Patients can also move out of hospice care if their condition improves, with the understanding that services can be re-instated when needed. Gina Raiford’s grandmother, for instance, has moved in and out of hospice for the past two years. Last month she celebrated her 97th birthday with her granddaughter, son and entire hospice team.

A wide range of services
According to the guidelines provided by Medicare, hospice services include almost anything related to pain and symptom management, including on-call care to manage acute pain episodes. It also extends to spiritual care, bereavement and counseling services, and in many cases art and music therapies. Private insurers generally cover all this, too. Many caregivers and health care professionals believe hospice is the most dignified and graceful way to deal with a terminal illness.

Because hospice is designed to support family and caregivers along with patients, respite care is often covered as well. With this service the patient may be admitted to a hospice facility or hospital for a certain number of days to provide a break for the caregiver. In Raiford’s case, her grandmother responded well to hospice services and they helped support her as a caregiver, during what became a very tough time. “My mother died and I had to tell my grandmother her oldest daughter had passed. The entire hospice team—everyone including the chaplain, the nurse, the social worker—helped me tell her. They helped me so much with everything during that time.”

Finding quality care
Unfortunately growth in the hospice industry has led to troubled providers with faulty management entering the field. The result can be large gaps in service, inadequate care and even outright fraud.

Be alert to anyone offering extra caregiving or pain management services without using the word hospice.
Last year the Office of the Inspector General (OIG) released a government report documenting lapses in care that sometimes left patients in pain for days. In other cases, service on weekends was rare and routine visits were often skipped. If you’re looking for hospice services for a loved on, be alert to anyone offering extra caregiving or pain management services without using the word hospice or explaining hospice rules.

You should also check on the following:
What services are offered. Quality hospice should offer, at minimum, 24-hour on-call service, in-person visits, medical equipment, related medications, inpatient care to manage acute bouts of pain, and continuous care in the home. The most recent satisfaction survey. Most hospice facilities conduct satisfaction surveys. Ask to see this data, says Mastrojohn. You’ll get a sense right away of how well the program is functioning.

Accreditation. Any hospice you are considering should be approved as a Medicare provider. In addition look for extra accreditations from NHPCO and other industry organizations.

The 24 hour on-call service. Even if the facility says they provide it, you need to dig deeper. One of the most common complaints found in the OIG report concerned patients and caregivers who needed help during an acute episode. But no one from hospice showed up, leaving both the patient and caregiver in a panic. That’s exactly the scenario hospice is designed to avoid.

So ask: Does the hospice guarantee calling back within a certain amount of time? Ask how many people are on call during the daytime, evening, night and weekends. Is there’s a back-up person or people to cover when assigned staff is busy?

There’s no reason to be afraid of good quality hospice care, says Raiford. “It has made my life and my grandmother’s life better in ways we never expected.”

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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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Hospice is here for patients and families

In the health care industry, awareness for hospice care continues to grow as more patients and families turn to hospice and understand the care hospice provides.

Although myths about hospice are that “it is only for cancer patients”, “hospice is giving up” or “too expensive, indeed the opposite is true.

Hospice illustrates that it is a vital part of end-of-life care and plays a significant role in health care in communities.

Here are some facts to know about hospice:

 

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How the Hospice Benefit Could Be Redefined

Published in Home Health Care News By Amy Baxter

As recent changes across the health care system over the last few years indicate that person-centered, interdisciplinary care can improve clinical outcomes, boost patient satisfaction and potentially lower overall costs, hospice care could see an evolution ahead.

Hospice has become known as the first truly interdisciplinary benefit, bringing together many types of care under one roof. As more alternative payment models (APMs), managed care organizations and Medicare Advantage plans seek more flexibility in caring for patients with a person-centered approach, hospice is similarly looking for a way into these increasingly popular care models.

Home Health Care News caught up with Edo Banach, CEO of the National Hospice and Palliative Care Organization (NHPCO), to discover how the association is helping push the boundaries of hospice care with a new advertising campaign aimed at consumers and lawmakers, and efforts to redefine the benefit. Banach, who has been at the helm of NHPCO for more than a year, has an extensive background of working closely with the regulations and innovations departments at the Centers for Medicare & Medicaid Services (CMS) before the hospice industry “came calling.”

Here’s where Banach believes hospice is going.

Overall, what are the biggest changes you’ve seen during your career in health care?

Banach: One thing that is positive is when I started working in health care 16 years ago, it was really hard. What I’ve seen is, back then, managed care companies weren’t falling all over themselves to manage coordinated care. You had a really more siloed system than you have now, pre-Affordable Care Act (ACA), pre-[Medicare] Part D.

Managed care companies can now pay for less medical benefits [by supplementing with non-medical benefits]. We’re getting more integrated. We are moving in the right direction. I want to make sure that the integration and technology is used as a tool to help supplement real, compassionate interdisciplinary care, not one-step-removed care.

So, you talk about hospice being a movement. Where do you see hospice moving to?

One way we see it moving is upstream, but it is an absolute shame that people have to give up so-called curative care in order to get palliative care, hospice. It shouldn’t be a choice. You should be able to get both.

I think when people get both, they often see the value of palliative care. There is a demonstration now called the Care Choices model, which is testing out if curative and palliative care saves money or not, [if it] is an improvement on quality or not, and that will be very helpful and telling.

My goal in the next couple years, if not the next couple months, is to create a pre-hospice palliative care benefit that will allow folks to benefit from person-centered interdisciplinary care, that you see in hospice, earlier. When they have a serious illness, [palliative care is] a pathway and a glide path to receive the full-on hospice benefit that they will eventually receive.

Most people are on hospice now for only a couple of weeks, if not a couple days.

Just like former First Lady Barbara Bush.

Yes, she took comfort care and passed away two days later. And I think that’s not enough time for the system of care to actually have the impact that it needs to have.

Part of it is the choice that people make. Do you want curative care or do you want palliative care? You should be able to get both, and I think that’s crucial. That’s something that we will get to.

What are your other top priorities?

The other thing is about the length [of stay]. The problem with Medicare fee-for-service [FFS] now is these black lines—if you’re on one side, it is OK, and on the other side it’s not. For home health it’s skilled, homebound, these are the things we talk about and auditors look at a lot. In hospice, it’s [about if] you have a prognosis of less than six months and a need for hospice care.

That six-month limitation is treated as a clinical issue. It’s not a clinical issue; it’s a budgetary issue. It doesn’t make sense anymore. Ideally, in a couple years we will have much more of a glide-path between [when a person is] going along swimmingly and getting whatever is medically necessary under Medicare and receiving interdisciplinary person-centered care under hospice.

And my hope is that interdisciplinary person-centered care actually becomes the rule rather than the exception. That’s how this movement will have worked. I don’t just want to reshape the hospice benefit, I want to reshape health care.

Seems like a big uphill battle to me, as new Medicare benefits really come along quite infrequently.

Yes and no. For this, it’s not actually as radical as it sounds. This is an APM that I expect will actually happen. There’s interest in it, we’ve had meetings about it. I am hopeful this is something that can be done.

You’re right, Medicare benefits come infrequently. But we are not talking about a new benefit here. We’re talking about flexibility to provide more person-centered care that is not the poked-and-prodded variety. And that’s exactly what is happening over at ACOs and in Medicare Advantage land. As that is happening and plans can now pay for supports and services, it will seem even less logical for FFS Medicare to be in this box. So I think it is imminent.

 

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