Kellie Holloran – Page 2 – St. Anthony's Hospice

Quality of Life Matters- Seriously Ill Patients Want to be Heard

March 2, 2022 Kellie Holloran Blog, Hospice, Palliative

St. Anthony’s Hospice is fortunate to receive a very informative quarterly newsletter entitled “Quality of Life Matters.” This latest publication has an article titled “Seriously Ill Patients Want Most to be Heard and to Participate in Care Decisions, National Survey Finds” and we had to share it with you!

SERIOUSLY ILL PATIENTS WANT MOST TO BE HEARD AND TO PARTICIPATE IN CARE DECISIONS, NATIONAL SURVEY FINDS

“Patient-physician communication and collaboration were the two most important aspects of high-quality serious illness care identified by U.S. adults. Patients want to know they are listened to and understood, according to a survey and qualitative research conducted in 2021 and released in October by the Massachusetts Coalition for Serious Illness Care.

“People are telling us loud and clear what they want from the healthcare system: to be heard,” says Atul Gawande, MD, MPH, Coalition co-chair and surgeon at Brigham and Women’s Hospital, Boston.

However, patients with serious illness, racial/ethnic minorities, and people with lower income levels were more likely than their counterparts to feel their clinicians did not understand their priorities and to leave a medical visit feeling uncertain about the next steps in their care, the survey found.

In a multi-phase project aimed at improving care for people with serious illness and their families, Coalition researchers surveyed a nationally representative sample of 1,854 adults, with oversampling for Blacks, Hispanics, people with low income, and seriously ill or disabled people and their caregivers. Subsequently, researchers engaged with 580 adults from across the nation and aligned with the U.S. census in online community forums. Asian adults were also included in the survey, but the sample size was too small to support confident interpretation, the authors of the report note.

Overall:

20% of survey respondents had a serious illness diagnosis and reported that performing their normal levels of work or activity had been harder in the past year.
87% of all respondents said it is important for clinicians to know their patients’ priorities and what is important to them; only 3% felt this was not at all important.
A smaller percentage of seriously ill patients compared with patients without serious illness believed their clinicians understood their life priorities (61% vs 71%), health goals (69% vs 79%), or what activities brought them joy and meaning (52% vs 62%).

Definition of quality care

Researchers found that the definition of quality care resonating the most among all participants was “Good quality care is collaborative with me.” Participants felt this included having clinicians who took time to learn about them so their healthcare would be the best possible fit.

For Black and Hispanic participants, the best definition was “Good quality care is kind, empathic, patient, non-judgmental, treating me (and everyone) as important and worthy of care.” This definition also ranked highly across all demographic groups.

From among a dozen theoretical clinician-conversation statements, forum participants in the qualitative research phase overwhelmingly selected “We’ll figure this out together” as being what mattered most for quality care. The top five statements that resonated as most important to them were:

“We’ll figure this out together.”
“I will make sure you really understand how each option will help you and what side effects or downsides it might have.”
“I’ll help you navigate through the choices ahead.”
“You’re the expert on what’s right for you, so the more you share, the more I can support you.”
“I need you to help me understand who and what really matters to you – your favorite activities, the people you love, your faith and culture.”

Areas in need of improvement:

19% of patients with serious illness say they often leave a healthcare visit feeling unsure about the encounter, outcomes, or what to do next compared with 9% of those without serious illness.
Similarly, higher percentages of people with disabilities (19% vs 9%), of non-White race/ethnicity (15% vs 9%), and of those in the lowest income quartile (17% vs 7%) also reported feeling uncertain about the import of the visit or what to do next compared with their counterparts.
Despite feeling uncertain following a recent medical visit, patients with serious illness more often reported they felt afraid to speak up or ask questions during a visit lest it impact their medical care than did those without serious illness (21% vs 11%). Similar percentages were also reported by racial/ethnic minorities and lowest income respondents.
31% of respondents with serious illness or disability felt they had been unfairly treated by clinicians in the past year, as did 21 % of those in the lowest income quartile, and 19% and 17% of Black and Hispanic respondents, respectively. The most frequently cited perceived reasons for unfair treatment were age (28%) and diagnosis (26%), followed by race/ethnicity (19%) and income level (17%).
The U.S. healthcare system as a whole was considered to be unfair by 61% of Hispanic respondents and by 50% of both White and Black respondents.
68% of Hispanics believed the U.S. healthcare system was unable to meet the needs of people with serious illness; 62% of Blacks and 54% of Whites agreed.

“Across all groups… a noticeable contingent had positive healthcare experiences that stemmed from doctors and staff showing empathy, kindness, competency, efficiency, good communication, attentive listening, and making the effort to understand the individual as a human being,” according to the authors of the report.

Most of the reported negative experiences were perceived by participants as due to a combination of clinicians’ discriminatory attitude, lack of empathy, poor communication and/or poor listening skills, and patients’ frustration with or anxiety about navigating the healthcare system. Patients also mentioned being hesitant to ask the cost of a treatment, for fear they would not receive the best care.

Speaking up was selected by participants across all groups as the most impactful action patients can take to improve their health and well-being. “As people age, they feel more prepared and willing to advocate for themselves,” states the report. “There is a sense of having more control and that they need to stand up for themselves and ask for what they need.”

Advance care planning

Despite the COVID-19 pandemic and nationwide attention on documenting care wishes, research shows that rates of advance care planning (ACP) completion nationwide decreased slightly from 2017 to 2021, notes the report. Discussions of serious illness between patients and family/ friends also fell slightly, while conversations with clinicians rose slightly. However, while 60% of Black and Hispanic adults in 2017 said they would want to talk to a physician about care wishes, only 40% in 2021 said they were willing to do so.

Informed by the Coalition’s 2020 messaging research project to understand how the public perceives terms used to describe ACP, the 2021 research focused on what was found to resonate most strongly with people: the “relational aspects of care, communication, and shared decision-making long before any serious illness diagnosis.”

Suggested improvement efforts include public engagement campaigns that empower and guide patients to speak up and share what matters most to them, and system-level programs or training for clinicians in trust-building: asking, listening, and ensuring patients feel heard and understood.

“There are many things we need to do differently to dismantle inequities in healthcare experiences,” says Gawande, who is also a professor at Harvard T.H. Chan School of Public Health and the founder and chair of Ariadne Labs in Boston. “These data are showing us that a clear place to start is investing in systematic approaches to improving the communication and connection that seriously ill patients and clinicians both want.”

The report, entitled “2020-2021 Public Experience Research Findings,” is available for download at no charge by visiting www.maseriouscare.org/research.”

This entire article was copied directly from the Quality of Life Matters issue Q2 2022 newsletter. St. Anthony’s Hospice did not write this article, we are only sharing for your information and benefit. We did bold some points that stood out the most to us.

Always remember to ask your provider for all of your options and what will give you the best quality of life! If you have a serious illness and are wanting help understanding the disease and managing symptoms, please call St. Anthony’s Hospice or Palliative Care at (270) 826-2326 or fill out our secure online referral form.

Signs A Loved One Needs More Care

January 6, 2022 Kellie Holloran Blog, Caregivers, Hospice, Palliative

The holidays have now come and gone, and most of us spent time with loved ones. For some, the Thanksgiving/Christmas season of 2021 may have been the first time seeing a relative since COVID began. With not having seen a loved one, it may be startling to see how much a loved one has changed since your last visit. It is vital to take note of the physical, cognitive, and behavioral changes to ensure your loved one is getting the proper care he/she needs.

Becoming a caregiver for a family member or loved one is a very rewarding task, but it can also be scary. Bringing in the right help, at the right time, can both take a huge stressor off you but ensure your loved one is receiving the optimal care he/she needs. This care can range from sitters, Meals on Wheels, transportation services, palliative or hospice care, home health, adult day centers, assisted living facilities, or nursing homes.

Signs Your Loved One Needs More Help

Sometimes if you don’t see a loved one regularly, it can be hard to see changes. Going to visit with him/her in the home and seeing if there are medications that haven’t been taken in a while, if your loved one has began to withdraw from activities that were once enjoyed, or if he/she has stopped caring for themselves or their home. You can’t see these changes over the phone so use this in-person visit to assess any physical, behavioral, or cognitive changes in your loved one.

Physical Changes

There are quite a few physical changes you will notice when a loved one begins to decline. The most prominent is a significant weight loss. This weight loss occurs without even trying, and may be an indicator that there could be a bigger problem. Your loved one may have difficulty eating, drinking, or moving around. More indicators can include stiffness or bruising/skin tears from a fall or other injury that your loved one doesn’t want to disclose. Poor hygiene is another indicator; including dirty clothes or not grooming themselves

Behavioral Changes

Whether obvious or subtle, behavioral signs are another indicator that something can be wrong. Maybe your loved one has always been a very good housekeeper, but now you notice their home is dirty or cluttered. Maybe he/she has a pantry and fridge full of expired groceries. Maybe he/she hasn’t opened their mail in a while or has no interest in activities once enjoyed. It’s also important to take note of mood swings, increased agitation, or changes in sleeping patterns.

Cognitive Changes

While anyone can have a forgetful moment, more occurrences of uncertainty, confusion, or a loss of reasoning skills are cause for concern. These might take form in missed or late payments, forgotten appointments, or forgetting to take medication. A lost ability to concentrate, trouble remembering recent events, or personality changes can be a sign of Alzheimer’s Disease or a form of dementia.

How to Get Help for a Senior

Every situation is unique! The appropriate care for your loved one may differ from someone else’s care since it depends on their changes and needs. If your loved one needs a higher level of care, hospice may be appropriate for him/her. If he/she needs care but isn’t quite ready to give up curative treatment options, palliative care may be better.

If you or a loved one is in need of hospice or palliative care, please call St. Anthony’s Hospice and Palliative Care at (270) 826-2326 or make an online referral.

How Hospice Supports Overwhelmed Families

November 15, 2021 Kellie Holloran Blog, Caregivers, Hospice

When a loved one is terminally ill, its a physically and emotionally draining time for the patient and their loved ones. A massive benefit of hospice care is that it isn’t just for the patient. The hospice team is there to support the entire family.

Hospice care begins at the referral. The Admissions Team at St. Anthony’s Hospice will ask questions to learn more about your loved one’s current conditions and wishes from the program. This is your opportunity to ask some questions and learn about the services offered by St. Anthony’s Hospice, including how we support the family.

Kentucky Hospice
Starting Hospice

Hospice care can be provided wherever the patient calls home- house, apartment, SNF, ALF, or the Lucy Smith King Care Center.

For patients in an assisted living facility, hospice care supports both the family and the facility staff by providing an increased level of care. Our experience in end-of-life care provides the patient and family with an extra set of eyes and ears in the home, tracking symptoms, managing them, and increasing visits as needed based on the patient’s needs. In addition to nurses and aides, the patient will also receive visits from a chaplain, social worker, an volunteers to ensure all of their needs are being met- physical, emotional,
spiritual, and social.

For patients at home, our team adds to the care the family is already providing. Hospice care does not mean that we take over all responsibilities of the primary caregiver; however we work alongside the caregiver and provide the medical care. All medication, medical equipment, and medical supplies related to the patient’s hospice diagnosis are delivered to the home at no cost to the family. That’s right, everything is included in the patient’s hospice benefit! The St. Anthony’s Hospice clinicians will provide training and education to the caregiver to ensure the patient is receiving optimal care both when we are in the home and when we are not.

We are 9-1-1 for the Hospice Patient

Caring for a loved one with a terminal illness is very stressful. Symptoms can change quickly or the patient can become restless and fall out of bed. That’s why St. Anthony’s Hospice is available 24/7 to answer questions and make visits, should an emergent situation arise.

Rather than calling 9-1-1 to get an ambulance or bundling up the patient to go to the ER, you just call St. Anthony’s Hospice. We can help keep your loved one where he/she wants to be while managing their symptoms and ensuring they have the right level of care.

Should a need arise where the patient does need hospitalization to control symptoms, that’s what the Lucy Smith King Care Center is for. Not only can a patient pay room & board to live there, but it is also used for respite care and as our “hospice hospital.”

Respite Care
Even with the extra help that hospice provides in the home, caregivers still need (and deserve) a break. St. Anthony’s Hospice offers respite care. This can be a volunteer coming into the home and sitting with the patient for an hour or few while the caregiver runs out to do errands, or take a little break. Or respite care can take place at the Lucy Smith King Care Center for up to 5 days while the caregiver goes on a vacation, has a staycation, attends a wedding or graduation ,or just simply tends to their own home and needs there.

Ongoing Hospice Family Care
Grief is a natural and healthy response to the loss of a loved one. We understand that everyone grieves differently. St. Anthony’s has bereavement support that lasts for up to 15 months after a loved one passes away, or longer should the loved one need it. And our bereavement services are completely free to everyone in the community, not just families of St. Anthony’s Hospice patients.

If you have a loved one in need of hospice or palliative care, please call us at (270) 826-2326 or make an online referral.

Why Not Hospice?

October 6, 2021 Kellie Holloran Blog, Hospice, Myths, Palliative, Professionals

“WHY NOT HOSPICE? A Reluctance to Refer” is a short educational material by Barbara Karnes, RN. Let’s take a dive into what this piece says, means, and hit on some common reasons why people don’t refer early enough (or at all).

While there are many causes of death, there are only 2 ways people die- fast or gradual. Fast deaths are what you often think of, car accidents, gun shots, and other quick deaths. Gradual deaths are those which have a process to it- think cancer, COPD, AIDS, heart failure, kidney failure, and other serious illnesses. Most gradual deaths occur due to old age, disease, or a combination of both. With diseases, the gradual death process may take weeks, months, or years. And the old age process takes years.

Have you ever thought about the information in the above paragraph? Have you thought that death can come to you quickly or gradually? Yet every person will be faced with death at some point in their lives- death of family members, friends, coworkers, and their own. Most people don’t like to think about death or even want to think about it. Even though only two things are guaranteed in our lives- you are born and you will one day die. Only when death happens close to us or when diagnosed with an illness do we begin to think about the possibility of dying.

So many agencies are very reluctant to recommend hospice, or even palliative care to their patients. But why? Trained hospice and palliative care clinicians can make the gradual death process smooth, beautiful, peaceful, and preserve dignity and independence for the patient and family. However, physicians and other healthcare providers, outside of the realm of hospice/palliative providers, are trained to cure and do all things necessary in order to achieve a cure. So, some physicians and providers can seen a hospice or palliative referral as a failure or are just unaware of the benefits of hospice and palliative care. It is perfectly okay to ask your provider for a hospice or palliative care referral.

If any of the hospice eligibility guidelines or palliative eligibility guidelines are present, make a referral to St. Anthony’s Hospice or Palliative Care. In short, Barbara Karnes, RN says:

Three things I look for to tell me if it is time for Hospice are: 1. the patient’s condition is deteriorating in spite of the treatment that is being given. 2. You look at the person and say to yourself (and we have all done this but not wanted to admit it) this person is not going to be here next year at this time.. 3. The family and significant others are having difficulty coping with the seriousness of their loved one’s condition. (Karnes Educational Piece)

A hospice referral is a win for everyone. If you refer to hospice and a patient/loved one is not yet eligible, he/she can enroll in the St. Anthony’s Palliative Care program and be referred to hospice care when appropriate. If you refer to hospice and a patient/loved one is eligible, all of the benefits of St. Anthony’s Hospice Care begins to kick in! These benefits include: visits from your hospice interdisciplinary team, control in your surroundings, access to the Lucy Smith King Care Center for respite, residential, or general inpatient care, expert pain and symptom management, help with advance directives and funeral planning, and so much more.

Sometimes patients can “graduate” from hospice care. This means the patient actually gets better while having their pain and symptoms expertly managed and no longer qualify for hospice care. These patients can be backed into St. Anthony’s Palliative Care program so we can still follow up on them while they are seeking curative treatments.

Many people don’t get referred to hospice care early enough to reap all of the benefits. Some reasons people are hesitant to be referred are because they don’t know the truth about hospice and only believe the myths.

Hospice Myths DEBUNKED

Myth: Families/patients must wait for their physician to suggest hospice care.
Fact: St. Anthony’s Hospice encourages all people to be advocates and explore all their healthcare choices. Anyone can call our office to refer a patient at (270) 826- 2326. We have a referral specialist standing by to answer all your questions and contact your physician for the referral orders, if appropriate.

Myth: Hospice should be called only in the last moments of life.
Fact: The earlier hospice is used, the more benefits patients and families get from the program! Pain and symptom management is more effective when delivered earlier in the disease process. Our number one complaint is that families wish they called St. Anthony’s sooner!

Myth: Hospice is only for the dying patient.
Fact: St. Anthony’s Hospice focuses on the grieving family as much as the patient. We have a team of professionals, including chaplains and social workers, who help with the bereavement process and a variety of other services that benefit the patient’s loved ones before and after their passing.

Myth: My doctor will no longer be my doctor if I become a hospice patient.
Fact: If he/she is willing, your doctor will remain your attending and will become part of the St. Anthony’s Hospice team in caring for you. Our St. Anthony’s staff physicians can also provide care if your doctor is unable to do so.

Myth: Hospice is only for cancer patients.
Fact: Any patient with an end-stage diagnosis can benefit from hospice. These examples include, but are not limited to: HIV/AIDS, end-stage kidney disease, congestive heart failure (CHF), Alzheimer’s/Dementia, cirrhosis, stroke/CVA, chronic obstructive pulmonary disease (COPD), septicemia (sepsis), and others.

Myth: Hospice is expensive.
Fact: Hospice is a benefit under Medicare part A; some private insurances and Medicaid will also cover services. In addition, durable medical equipment, disposable medical equipment, and prescriptions related to the life-limiting condition are covered under these benefits, easing the financial burden on the patients and their families. No person is turned away from St. Anthony’s Hospice due to inability to pay.

Myth: Hospice care is only provided in the patient’s house.
Fact: While many patients who live alone, or with family, receive care in their homes, hospice services are available wherever the patient calls “home.” This means services can be provided in the patient’s house, a nursing home, or assisted living facility. In addition, we also provide services at the Lucy Smith King Care Center, our hospice hospital.

Myth: Hospice is about dying.
Fact: Hospice is about quality of life! When pain and symptoms are managed properly, patients make the most of the time they have left. They are able to spend time with friends, family, and pets in the comfort of their own home while being in control of the care they are receiving. Choosing hospice does not mean the patient is giving up hope or that death is coming soon. Patients often live longer under hospice care since pain and symptoms are under control.

Myth: All hospices are the same.
Fact: While the federal regulations governing hospice programs require the same standard services, that does not mean they are all the same. St. Anthony’s Hospice has been serving the residents of Henderson, Union, and Webster counties since 1982. In 2016, we began our Palliative Care program for those who seek pain and symptom control, while still seeking curative treatments.

Myth: Hospice means I’m going to die soon.
Fact: Many studies have shown the exact opposite! With your symptoms under expert management, studies have shown you can live longer with hospice care (if you are enrolled early enough). Hospice does not hasten death nor does it prolong life. These studies have proven hospice effective in improving quality of life which can sometimes improve quantity of life, compared to those with the same illness but not receiving hospice care.

Myth: Once enrolled in hospice, you cannot get out except when you die.
Fact: You can decide to leave hospice care at any time to pursue aggressive treatments. On the other hand, we have patients who get better with the symptom management and “graduate” from hospice! If you decide to re-enroll in hospice care and still qualify, you can always come back.

Myth: Hospice takes away all medications.
Fact: Hospice care is all about managing symptoms, which we do with medications. This does not mean that hospice care over-medicates patients or removes all medicines. In some cases, we do de-prescribe to reduce the amount of medication the patient will be taking. This is used to reduce medicines with heavy side effects or ones that are simply not benefitting the patient or increasing their quality of life.

If you, a loved one, or a patient is in need of hospice or palliative care, please call St. Anthony’s Hospice or Palliative Care at (270) 826-2326 or make an online referral.

Source found here.

5 Facts About the Stages of Grief

October 4, 2021 Kellie Holloran Bereavement, Blog

You may have heard that grief occurs in set stages: denial, anger, depression, ,bargaining, and acceptance. However, no two people grieve in the same way so how can we classify everyone into certain stages?

Instead of grief looking like this:

It often looks more like this:

Not everyone experiences all of the stages of grief, and some people may hit a stage farther down in the list and revert to one earlier in the list. These “stages of grief” are merely a tool to help us identify what we are feeling after experiencing a loss. These stages were developed by a Swiss-American Psychiatrist named Elisabeth Kübler-Ross. She wrote a fantastic book entitled On Death and Dying in 1969, where she discussed the 5 stages of grief. You can read more about her biography and pioneering grief studies by checking out this link. For now, we are going to dive into what each stage looks like.

Denial Stage

“This can’t be happening.”

“But I feel great! How can I have cancer?”

“I just saw Grandpa last week and he seemed fine. I can’t believe he died last night.”

It is completely normal to rationalize your overwhelming emotions. This is a common defense mechanism that helps absorb the blow of the immediate shock.

We tend to block out the truth and hide from the facts. This is a temporary response that carries us past the first wave of pain we experience after a loss. Once you explore the situation surrounding your loss, reality tends to set in. There’s no time limit on the denial stage. It’s your body’s way of protecting itself.

Be open to seeing reminders of your loved one, as painful as it may be. Visit the gravesite, look through old pictures, listen to their favorite songs, or wrap yourself in your loved one’s favorite clothing or blanket. Talk through your denial with family, friends, or a grief counselor.

Anger Stage

“This is all your fault!”

“It’s Nana’s fault she got lung cancer. She smoked 10 packs/day for 65 years! Now she’s gone and I have to deal with all of this pain.”

“Dr. So-N-So didn’t do anything at all to cure Aunt Susie’s COPD! It’s his fault she died!”

In the “anger stage” we tend to search for someone to blame, feel intense guilt ourselves, and lash out at loved ones or even the decedent. As the numbing effects of the denial stage wear off, you may not be ready to cope with the loss of a loved one, so you express your intense pain as anger. Your anger doesn’t have to be logical or invalid. For example, you are mad at Dr. So-N-So for not curing Aunt Susie’s COPD when you know he did what he could but COPD can’t be cured.

Honor your anger! Allow yourself to be angry and express it! We don’t mean pick a fight with someone. Express your anger in a healthy manner- go for a run, try out a kickboxing class, find a solitary place and just scream. Don’t keep your anger all bottled up. Explore it in a way that doesn’t harm yourself or others. Talk through your anger with family, friends, or a grief counselor.

Bargaining Stage

“What if we went for a 2nd opinion? Would Grandma still be here?”

“What if I am nicer to everyone and start doing community service, God? Will you spare Uncle Jim’s life?”

This bargaining stage of grief may seem silly, but it serves an important purpose. It provides a temporary escape from the pain you are experiencing and provides hope. This temporary escape gives you time to adjust to the realness of the situation. Sometimes when attempting to bargain with God, feelings of guilt aren’t far away.

Talk to family, friends or a grief counselor about your bargaining hopes and wishes. They may be able to provide you with some perspective and help you through this phase.

Depression Stage

Intense sadness, decreased or increased sleep, reduced appetite, loss of motivation.

Depression usually occurs when reality officially sets in. This stage feels like it lasts forever, because our grief transitions into present-day and the depression hits on a level much deeper than anything experienced thus far in the grief stages. It’s important to know the depression experienced in the stages of grief is not a sign of mental illness. However, if you are experiencing suicidal thoughts or actions, please seek immediate professional help!

Give yourself time to feel your emotions. Don’t let anyone tell you to “get over it” or simply “move on”. In order to healthily heal, you must acknowledge your pain. Avoiding your depression associated with grief can transition into chronic depression, anxiety, substance abuse, or other mental/physical illness. Talk to family, friends, or a grief counselor to express your feelings. You can even do something creative to express these feelings; write a letter to your loved one, create a photo album or scrapbook of your loved one, create a playlist of your loved one’s favorite music or music that reminds you of him/her, or volunteer at a place your loved one thought was special or a place that took care of your loved one.

Acceptance Stage

“I’ll never be okay with losing my grandma, but I cannot let my grief control my life.”

Acceptance does not mean you are “okay” with the loss of your loved one. Most people don’t ever feel “okay” about losing someone they love. The acceptance stage is still a process, it isn’t a final stage with an ending.

Understand that the acceptance is learning to live with the new normal in your life, not that you must be “okay” with the loss. Be patient with yourself. It may take some people years to reach this stage, while others may reach it quickly and bounce back to denial several times before fully accepting the new norm. Talk to family, friends, or a grief counselor to help reach the acceptance stage and come to terms with your new normal.

Unfortunately, grief and loss are some things everyone experiences at one point in his/her life. St. Anthony’s Hospice offers FREE grief support and counseling to anyone, not just families of hospice patients. We believe everyone should have a safe and healthy way to manage their grief. Please call us at (270) 826-2326 or visit our bereavement page.

Sources of photos found on photos.

Documentaries We Recommend

September 21, 2021 Kellie Holloran Blog, Caregivers, Hospice, Palliative, Professionals, Stories

There are so many good shows, movies, and documentaries out there; especially on your favorite streaming platform. Recently we came across 2 fantastic (and short) documentaries on Netflix that dive into the end of life and its effects on the patient and their loved ones. Grab some popcorn and tissues and check these 2 out!

If you’ve been following us on social media (you should, if you don’t already) you may have seen one of our favorite books, “A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death” by BJ Miller, MD and Shoshana Berger. For those who aren’t familiar with Dr. BJ Miller, his story, and his dedication to hospice and palliative care, check out his interview in the NY Times or his TED Talk. Dr. Miller founded the Zen Hospice Project in California. You can also see him in the first documentary we watched.

End Game (2018)

photo from IMDB

The description from Netflix says, “Facing an inevitable outcome, terminally ill patients meet extraordinary medical practitioners seeking to change our approach to life and death.” This 40 minute documentary follows terminally ill patients and their practitioners as they navigate the tricky world of end of life care. The goal of this documentary is to change the perception around hospice and palliative care. It’s both heart-breaking and beautiful. Check out the trailer on the Netflix website here. Everyone should watch this to better understand end of life care and the impacts on the providers, patients, and their families.

Extremis (2016)

photo from Wikipedia

The description from Netflix says, “Witness the wrenching emotions that accompany end-of-life decisions as doctors, patients and families in a hospital ICU face harrowing choices.” This short, 24-minute long documentary is packed full of emotions. The main provider in this documentary really shows the full range of emotions experienced by physicians when faced with having the tough end of life discussions. Not only does it show the hard times physicians go through caring for terminally ill patients, it also shows the heart-wrenching decisions family members must make when there are no advance directives in place. Check out the trailer on the Netflix website here.

Both of these documentaries will pull at your heartstrings. Be sure to have some tissues ready! Keep your mind open when watching these, so you can really see and listen to the lessons both teach on end of life care.

If you or a loved one is in need of hospice or palliative care, please call us at (270)826-2326 or make an online referral.

What to Expect When Expecting Home Hospice

August 9, 2021 Kellie Holloran Blog, Hospice

Experiencing the end of life like this, isn’t something most people want to think about.

Unfortunately, most people don’t realize that hospice care can be provided wherever the patient calls home, such as their private house, caregiver’s house (if the patient lives there), apartment, nursing home, assisted living, or the Lucy Smith King Care Center. We wanted to talk about some things to expect when receiving hospice in your home. This turns your experience with death from the above photo, to this.

Whenever the time comes for you to think about hospice care for yourself of a loved one, St. Anthony’s Hospice wants you to know what to expect. We want all patients to be comfortable in your choice of surrounding, because nothing beats home sweet home.

1. Control in Your Surroundings

When receiving hospice care at home, you get to decide your surroundings. This means your are in a familiar environment and with familiar faces. Unlike being in the hospital, you aren’t annoyed with a (potential) roommate, beeping through all hours of the night, or someone waking you every 15 minutes to get vitals.

Some people may want their beloved pet close to them and snuggling the night away. Some may want to have loved ones around them all the time. Some may want their favorite photos and belongings close by, in case some feelings of nostalgia creep in. Other benefits come from being at home. For example, some religious practices can continue and visitors can come and go, 24 hours per day, 7 days per week.

Whatever the definition of a loving and comfortable home is to you, hospice can help! A nurse is available to you 24 hours per day, 7 days per week. While your nurse may not be in your home 24 hours per day, they are a phone call away and will be there to help. Not only do you have a nurse that comes to your home, you also have an aide, social worker, and chaplain! This care team will help manage symptoms and other stressors to keep you home and comfortable for however long you are under St. Anthony’s care. Read about the interdisciplinary team here.

2. Comfort

A St. Anthony’s Hospice Admissions Nurse visits you while in the hospital. Not only to sign the papers to admit to hospice care, but to evaluate you on the level of care that is appropriate for you. The admissions team also works with your hospital nurse and case manager to get you discharged and home to begin hospice care. Once you arrive home, your nurse will come to the home and get the hospice process started! If you do not need a nurse visit the night you come home, you can let the nurse know and he/she will come out the next day.

In order to get and keep you comfortable, durable medical equipment is delivered to your home. This equipment is covered under your insurance and includes a hospital bed, oxygen, bedside table, bedside toilet, and choice of walker, wheelchair, or transport chair. Other equipment may be covered if deemed necessary from your physician. This equipment is necessary to keep you comfortable and assist caregivers and hospice clinicians in your care.

The goal of hospice care is to keep patients out of the hospital. In order to do so, we provide the patient with everything he/she needs so the St. Anthony’s team of clinicians can conduct the care and services for the patient.

3. Meeting the Team

In the beginning of a hospice admission, you are meeting a lot of people. Your nurse, aide, social worker, and chaplain will all make visits. Normally, a volunteer or two would visit, however due to the COVID-19 pandemic, volunteers are not entering patient homes. Your care does not stop when your nurse isn’t in the home. You have access to a nurse 24/7. This means if a need arises in the middle of the night, one phone call and a nurse will make a visit to assess the situation and provide necessary care.

Your St. Anthony’s care team will walk you through what their roles are and how they work together to keep you comfortable and preserve your dignity and independence. Check out our previous post on the interdisciplinary team here.

4. When the End is Near

The last bit of a patient’s life can be a scary and overwhelming time for the patient and their family. With St. Anthony’s Hospice, you have support and guidance so you are never alone.

One common fear among people is dying alone. We do everything we can to prevent that. Our home team of clinicians are trained in the signs of death so if the caregiver is out, the patient’s nurse can call and let them know their loved one is close to dying, while staying with the patient.

Once enrolled in hospice care and even through death, your social worker will help ensure your advance directives and funeral plans are in place so your family doesn’t have to wonder how you would have liked your service or how they will pay for everything.

No matter what, St. Anthony’s is there for your and your family. After the patient passes, we offer bereavement services for anyone- not just the primary caregiver. Read more about our bereavement services here.

Remember, no one should face the end of life alone, in pain, or scared of what is to come. St. Anthony’s Hospice is there every step of the way, taking care of comfort and education on the disease and end of life process.

If you or a loved one is in need of hospice or palliative care, it’s never too early to call! Give St. Anthony’s Hospice a call at (270) 826-2326 or make an online referral here.

Quality of Life at the End of Life

August 2, 2021 Kellie Holloran Blog, Hospice

“Who is there in all the world who listens to us? Here I am- this is me in my nakedness, with my wounds, my secret grief, my despair, my betrayal, my pain which I can’t express, my terror, my abandonment. Oh, listen to me for a day, an hour, a moment, lest I expire in my terrible wilderness, my lonely silence. Oh God, is there no one to listen?” -Seneca

Just a small quote from Seneca about the physical and mental tortured endured by a dying person. This is most often what people fear when they think about dying. This “suffering” isn’t commonly treated in traditional healthcare. Typically, traditional healthcare focuses on treating the illness or ailment faced by a person. While we are all grateful for these amazing clinicians, physicians, surgeons, etc. who treat these illnesses, sometimes there is nothing more that can be treated and the focus must shift from treating the illness to treating the patient.

Enter hospice care! Healthcare has not failed when a patient can no longer be treated/cured, it is just time to shift the focus onto comfort and ending suffering. Your body may be failing you but your quality of life is improved when hospice care comes into your care plan. St. Anthony’s Hospice care manages symptoms and controls pain to give our patients the highest quality of life for however long they are with us. Hospice care does not mean you are giving up on your loved one. It is extra help to ensure your loved one is comfortable and both you and your loved one have all the help and support you need.

Hospice is not a place; it is a philosophy of care. It treats the person, as opposed to the disease, and hospice focuses on quality of life. It surrounds the patient with an interdisciplinary team of experts who come together to treat the 5 types of pain for the patient- physical, emotional, psychological, spiritual, and financial. St. Anthony’s Hospice & Palliative services are centered around each individual patient with a care plan tailored to each patient’s individual needs. All of this can be done wherever the patient calls home or the Lucy Smith King Care Center, our inpatient hospice unit. Beginning hospice care early in the terminal diagnosis, ensure all symptoms are expertly managed which improves quality of life and can even improve quantity of life.

Nearing the end of life does not necessarily mean the patient is close to death. While hospice care is for patients with a life-limiting illness that should the illness run it’s normal course, the patient has a life expectancy of 6 months or less. A patient must meet hospice eligibility requirements set by the Centers for Medicare and Medicaid Services. You can see a list of general eligibility requirements here.

We’ve said it so many times, hospice does not hasten death! Rather, when a patient’s physical, psychological, spiritual, financial, and social symptoms are properly managed, a patient can live for much longer. If hospice care is started early in the disease process, a patient receives more benefits!

So why wait? Even if you or a loved one is still seeking curative treatments, St. Anthony’s offers palliative care. Whether you or a loved one are ready for hospice or palliative care, give St. Anthony’s a call to help answer your questions and ease your suffering. Call us anytime at (270) 826-2326 or make an online referral here.

Source for quote found in Dame Cicely Saunders’ writing, J Palliat Care from 1988.

Honoring Last Wishes

July 23, 2021 Kellie Holloran Blog, Hospice, Palliative

We have many beliefs at St. Anthony’s Hospice.

We believe everyone should have the opportunity to die with dignity.

We believe the end of life is as precious and fragile as the beginning.

We believe death should be a peaceful experience.

We believe you should leave this world with no regrets.

Our Chaplains, Thomas Emerson and John Brumfiel, with Social Worker Christa Flamion embodied these beliefs to help one of our patients, Sidney “Sid” Stone. Sid’s beloved wife, Francis, passed away and he was unable to attend her funeral due to his declining health. Thomas, John, Christa, and a team of nurses helped ensure Sid would be safe and have everything he needs for an outing. The outing was a funeral service for Francis.

Social Worker, Christa Flamion, wrote:

“Sidney “Sid” Stone had been getting progressively ill and while he found himself hospitalized, his beloved Francis suddenly left this world. He was too ill to be present at her funeral just a couple of weeks before he was admitted to Saint Anthony’s Hospice’s Lucy Smith King Care Center (LSKCC). Sid proudly served in the Army in Vietnam and known well when he returned home and served throughout his community in Morganfield, KY. To know him is to love him as he was a reflection of a man of strong, honorable character. During conversations with staff at LSKCC we came to know him and he openly spoke of the love of his life, his Francis, and the evident void she has left behind. Therefore, in a collaborated effort through nurses, chaplains, and a social worker were able to give an opportunity for Sidney to be transported to Odd Fellows Cemetery in Morganfield, KY for the first time since Francis was laid to rest. Sid spoke numerous kind words of gratitude and thanks for allowing him the opportunity to visit Francis’ grave. However, the privilege was more for St. Anthony’s staff to have an opportunity to give witness to a real-life testimony emulating a story of loyalty and love such as found in the book of Ruth.

But Ruth said: “Entreat me not to leave you, Or to turn back from following after you; For wherever you go, I will go; And wherever you lodge, I will lodge; Your people shall be my people, And your God, my God (Ruth 1:16).

Those very biblical words echoed through Sidney’s heart as he struggled to say this verse once more at the grave of chosen love Francis Stone just as he said on their wedding day. One might say Sidney’s love story appears no different to other’s before him that had spent a lifetime with a spouse. Still this is a significant and unique story all the same as this love story was set apart and chosen by God’s grace and just for him. As evident today as he continues in waiting until they are reunited together again.”

If you or a loved one is in need of hospice or palliative care, please call us at (270) 826-2326.

Say What? A guide to understanding your diagnosis

July 13, 2021 Kellie Holloran Blog, Hospice, Palliative

Have you ever left a doctor’s appointment or the hospital and just thought to yourself “what in the world did they just say to me?” Your doctor doesn’t intend to confuse you, sometimes they forget to bring the medical terms into everyday terms.

Not only are the terms difficult to understand, but it is difficult to comprehend much after hearing bad news. Most people aren’t fully educated on the terminology used by medical professionals. This along with the feeling that falls over when you hear bad news can create a cloud of confusion for the patient and their family.

We have complied some of the commonly used medical terms you may hear during a doctor’s visit. By understanding their meaning, patients and families can make a more informed decision moving forward. All definitions, unless specified, are taken from Merriam Webster’s Medical Dictionary.

Common Medical Terminology

Diagnosis: “the art or act of identifying a disease from its signs and symptoms.” Doctors assign each diagnosis a formal name such as “cancer”, “COPD”, “cirrhosis”, or “influenza.”

Chronic: “marked by long duration, by frequent recurrence over a long time, and often by slowly progressing seriousness : not acute.”

Terminal: “being at an end; leading ultimately to death; approaching or close to death : being in the final stages of a fatal disease.”

Prognosis: “the act or art of foretelling the course of a disease; the prospect of survival and recovery from a disease as anticipated from the usual course of that disease or indicated by special features of the case.” The likely outcome of the disease over time. Even though doctors have access to the best diagnosis tools, a prognosis is still a best guess. Healthcare providers arrive at a prognosis by taking into consideration:
– All test results
-Previous outcomes of patients with the same diagnosis, age, and health status
– Treatment options
– The patient’s current health status
No one person can perfectly predict the course of a disease or say with certainty when a patient will die.

Palliative Care: “patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering.” -definition from CMS webpage; “medical and related care provided to a patient with a serious, life-threatening, or terminal illness that is not intended to provide curative treatment but rather to manage symptoms, relieve pain and discomfort, improve quality of life, and meet the emotional, social, and spiritual needs of the patient”.

Palliative care should be considered early in the chronic disease process. The goal of palliative care is to reduce symptoms and pain associated with the chronic illness. Palliative care works in conjunction with your primary care provider and any specialists you may see. For more information on St. Anthony’s Palliative Care, check out our webpage here.

Hospice Care: “Hospice is a comprehensive, holistic program of care and support for terminally ill patients and their families. Hospice care changes the focus to comfort care (palliative care) for pain relief and symptom management instead of care to cure the patient’s illness”- definition from CMS page. “a facility or program designed to provide palliative care and emotional support to the terminally ill in a home or homelike setting so that quality of life is maintained and family members may be active participants in care”

Hospice care is not giving up! It is an alternative means of treatment that focuses on treating the person and easing suffering, rather than the disease. Learn more about St. Anthony’s Hospice Care here.

Kentucky Hospice

St. Anthony’s Hospice and Palliative Care tailors each care plan to the individual patients. Our goal is to provide optimal end of life care and to give our patients the highest quality of life for however long they are with us. Ensuring each patient has the highest quality of life allows them to share more moments and memories with loved ones and allows them to say everything they need to say.

If you or a loved one is in need of hospice or palliative care, please call us at (270) 826-2326 or make an online referral.

Quality of Life Matters- Seriously Ill Patients Want to be Heard

Signs A Loved One Needs More Care

How Hospice Supports Overwhelmed Families

Why Not Hospice?

5 Facts About the Stages of Grief

Documentaries We Recommend

What to Expect When Expecting Home Hospice

Quality of Life at the End of Life

Honoring Last Wishes

Say What? A guide to understanding your diagnosis

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Say What? A guide to understanding your diagnosis