Family

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 Help Your Loved One Stay in Touch with You

During the holidays, relatives will especially rely heavily on two-way communication to stay connected.

Published in caringfromafar.com 

Technology makes communicating with your loved one as easy as the push of a button, which is a true blessing for long-distance caregivers. However, your loved one might not be as tech-savvy as you are, or they may have trouble communicating due to vision or hearing deficiencies. The following are simple ways to make staying in touch a breeze:

Start with the Basics

You might have gotten rid of your landline phone years ago, but for older adults, this is the phone they grew up using and are most comfortable with. Technology is confusing, and trying to teach your loved one how to use it could be more stressful than it is helpful. In fact, a landline phone may even be the safest option, as it reduces time spent routing the call to the correct emergency response center. In addition, calls from landlines automatically show emergency responders the address, name of the residence, and a map, which could be a lifesaver should your loved one call for help and be unable to talk or get confused about where they are.

Depending on your loved one’s needs, you can switch out the landline for something more feasible such as a phone with larger buttons or a high ringer volume. Keep in mind that getting your loved one a cell phone, and teaching them how is use it, is still a good idea, as they can take it with them when they are out of the house. To really ramp up the communication measures, install a medical alert system that makes communication with emergency services quick and simple.

Set a Schedule

Once you choose the preferred communication, set up a time each day to check in and stick to it. This not only gives you peace of mind that your loved one is okay, but even simply hearing a familiar voice could be the daily pick-me-up they need. If your loved one is tech-savvy, use video chat such as Skype or FaceTime, or have a local family member or in-home caregiver assist them.

In addition to communication with your loved one, it is imperative that you chat regularly with their primary caregiver to get details and information your loved one might not feel comfortable sharing with you. If you chose to hire an in-home caregiver, check in with them daily, and don’t be afraid to request a log of what they did each day. Don’t forget to ask your loved one how they feel – sometimes caregivers aren’t the right match.

Staying in touch with your loved one will take a continued effort on your end, but it is just one of the many responsibilities that come along with being a long-distance caregiver. With the right technology and a consistent schedule, you can make the miles between you seem far less.

 

 

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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 to take the worry out of providing long-distance care to seniors

By caringfromafar.com

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.

 

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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.

 

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