Palliative Care … What’s the point??

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By Victor Montour

Day after day as my colleague and I are pounding the pavement going from one community partner to the other and we hear “What is the point of Palliative Care?” I hope today I can shed some light on what palliative care is and why it is a vital role in the wellbeing of patients dealing with a life-limiting disease.

If you were to look up a definition of palliative care it would read something like this:

Palliative care is a team approach that improves the quality of life of patients and their families facing the problems and or complications associated with a life-threatening illness, through the prevention and relief of suffering by means of early identification, by impeccable assessment and treatment of symptoms and other problems, physical, psychosocial and spiritual.

It is important to know that palliative care should be given throughout a patient’s experience with their life-threatening illness. It should begin at diagnosis and continue through treatment, follow-up care, and the end of life. Palliative care intends neither to hasten nor postpone death.  The primary goal of palliative care is to enhance quality of life and positively influence the course of and individual’s illness.

Research shows that palliative care and its many components are beneficial to the patient and family health and well-being. A number of studies in the recent years have shown that patients who have their symptoms controlled and are able to communicate their emotional needs have a better experience with their medical care. Their quality of life and physical symptoms improve.

Now let’s get down to the real substance of what palliative care can offer. To help answer the questions of “What is the point of Palliative Care?” I want to make sure to address some very specific topics or items. You see palliative care can address a large range of issues that integrates an individual’s needs into their care. The physical and emotional effects of a life-limiting disease and its treatment may vary differently from person to person.

For example, differences in age, culture background, or support systems that result in very different palliative care needs.  A comprehensive Joint Commission Certified Community Based Palliative Care program like the one at Front Range Hospice and palliative care will take the following issues into account for each patient and work to help the patient set goals to address the issues that will provide them with The Best Days Possible.

Below I have listed some common issues addressed physically, emotionally and spiritually in order to paint a better picture of how palliative care can help you or your patients.

Physical – Common physical symptoms that are managed in palliative care include fatigue, loss of appetite, nausea, vomiting, pain, shortness of breath, insomnia, water weight gain, and many others. This list is not inclusive of all symptoms that can be managed. The Physician or Nurse Practitioner working in conjunction with your primary care doctor and your specialty doctors can develop a plan that is tailored to the individuals needs with the focus being to manage symptoms early so the patient can have the best quality of life at home and prevent exacerbations and returns to the hospital Emergency Department.

Emotional and coping – Our palliative care specialists can provide resources to help patients and families to deal with the emotions that come with a life-limiting diagnosis and treatment. Depression, anxiety, fear and loss are only a few of the concerns that can be addresses in our palliative care program. Again, this list is not all inclusive of our services. Our experts may all so provide counseling, advanced care planning, recommend support groups, hold family meetings or make referrals to mental health professionals, affirm life and regard dying as a normal process.

Spiritual – With a life-limiting disease, patients and families tend to look more deeply for meaning in their lives. Some feel their diagnosis brings them closer to faith; others might question their faith as they work to understand why this disease happened to them. Our experts in palliative care can help the patient and family find a sense of peace or reach a point of acceptance that is appropriate for the patient and the family’s situation.

Hospice – Making the transition from curative treatment to end-of-life care is a key part of palliative care.  The Community Based Palliative Care team at Front Range Hospice and Palliative Care can help patients and their loved ones prepare for physical changes that may occur near the end of life and address appropriate symptom management for this stage of care. The team can also help patients cope with the different thoughts and emotional issues that arise, such as worries about leaving loved ones behind, reflections about their legacy and relationships, or reaching closure with their life. In addition, palliative care can support family members and loved ones emotionally and with issues such as when to withdraw cancer therapy, grief counseling, and transition to hospice.

Patients and their loved ones should ask their doctor about palliative care. In addition to discussing their needs for symptom relief and emotional support, patients and their families should consider the amount of communication they need. What people want to know about their diagnosis and care varies with each person. It’s important for patients to tell their doctor about what they want to know, how much information they want, and when they want to receive it.

For more information on our Joint Commission Certified Community Based Palliative Care please contact our office at (970)776-8080 or (303)957-3101 to speak to one of our community liaisons.

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Choices

choices

By Victor Montour

Today I want to talk about choices. Life is all about choices, most of the time we all make good choices. Then we have moments in life we think we are making good choices but in fact are making a bad choice. The choices we make affect you or maybe a loved one in a positive or not so positive way.

In today’s modern world we tend to get caught up in the glamour of things or the newest trends, myself included. It’s hard not to when you have people coming to you offering you the newest and greatest product or enticements to use their services.

Unfortunately, this same model of marketing or sales has penetrated the healthcare industry in an astronomical way. People are being sold on the glamour of a skilled nursing facility, or a weekly delivery of Starbucks or muffins or some other tantalizing goodies given to healthcare professionals to persuade them to refer patients to them. I have to ask, what does this have to do with the care you or your loved one is receiving? More and more people make healthcare choices based off of this type of marketing. I ask you is this a good choice or bad choice?

In my opinion people think they are making a good choice but in fact their choice may not be as good as they thought it would be. Once they are in the middle of care they may be seeing short comings in the care their loved one is getting. Things like, meds not being given on time, equipment is not readily available for use, and staff are not as well trained to provide the care needed and so on.

As healthcare consumers we all must be educated on the things that matter. What matters more than knowing what kind of care can be expected?  I’m going to share a case with you today that will demonstrate how excellent care should be the focus and not the colors on the walls in a facility or goodies delivered this week. Patient care should be everyone’s primary focus.

Front Range Hospice and Palliative care received a referral for Palliative care services for a patient who at the time was at a local hospital. Our Community Liaison contacted the discharge planner and began the dialog on what the goals were for this patient and family upon discharging to home. The administrative team at Front Range Hospice and Palliative Care began the clinical review process to determine if this patient met criteria for Palliative Care. It was determined rather quickly Palliative Care would not be the correct level of care, in fact this patient need more care then what Palliative Care would have provided.

This is a 45 year old patient who was diagnosed with cancer in the middle of the year in 2015. This cancer was inoperable and the patient did not tolerate chemotherapy. The patient and the patient’s mother started working on the patients bucket list. The patient had places to see and things to do so they did that for a while. Once back in Colorado the patient had intractable pain that put the patient into the hospital several times. On this last admission in patient Palliative Care was brought in to help manage the patients symptoms. With the help of the inpatient Palliative Care team at the hospital they found a medication regimen that was working. However, it was such a high dose of pain medication that was almost impossible to find in the community on short notice.

Now, I talked earlier about how the care a patient receives is the most important item we all need to be looking at. Well, that is true, with that comes the patient as a whole person and the wishes the patient may have. While the clinical teams in the hospital and at Front Range Hospice and Palliative Care worked on the clinical needs. The Community Liaison at Front Range Hospice and Palliative Care was able to clarify some very important needs and wishes from the patient and family. Don’t forget this patient is very young and has a lot to accomplish in what maybe a short period of time. This patient first and foremost wants to go home to die. No nursing homes, not inpatient unites, just home.

Now most hospice agencies and acute care hospitals would have said this patient is too complex to manage outpatient at home and would have insisted the patient be moved to an inpatient hospice unit. Now don’t let me miss lead you, inpatient care is wonderful when appropriate and it’s the choice you make for yourself or your loved one. This patient was directed to an inpatient hospice unit and was not happy with the plan of care given to them for placement. Plus, it’s just not what the patient wanted. This patient wanted to go home and be present at the birth of the new niece expected any day.

We all have choices; our choices are not taken away because we have a terminal illness or are actively dying. This patient had made their choices clear, it is our responsibility as professionals to help patients achieve their goals, their wishes, and honor their choices.

Knowing the choices and wishes that this patient has expressed the team at Front Range Hospice and Palliative care started working in overdrive. The team had some insurmountable tasks to accomplish in a short period of time. Infusion Company had to be located who could start this patient on a home CADD pump with a large specific cocktail of medications. A discharge plan from the hospital had to be developed that would ensure the safest most effective care at home. The challenges kept coming; it took two tries to find an infusion company that can meet the patient’s needs. The patient lives in the mountains with windy one lane roads leading to the house. This was a major barrier for the nursing team especially with snow fall. The Front Range Hospice and Palliative Care team was able to think outside the box and come up with a solution to ensure nurses can get to the patient safely when needed. The team worked tirelessly with the mother who was the primary caregiver to her son to teach her how to give the medications, how to operate and trouble shoot the IV CADD pump and any other nursing care duties she may need to perform in the nurses absence. Now please know, Mom wanted to carry out this last wish from her child, she was the soul caregiver for the patient and she has others in the home she has to care for as well.  But she has somehow found the strength and manages all the medication administration, including caring for the IV and the CADD pump which she was scared to death of.  But after hours of teaching and support from the nurse the mom is comfortable providing the care needed for this patient knowing she has support when needed 24 hours a day 7 days a week.

Knowing mom had some anxiety about the volume of care this patient needed. Front Range Hospice and Palliative care worked on a couple of alternative plans. One, if the patient and mom need help and are not able to care for the patient at home we have arranged for placement in a skilled nursing facility not too far from their home. We also had set up, if needed, a non-medical agency to come in and help with cares. Again, these options are available if the patient or family chooses to use them, not required or mandatory.

We are so happy to say this patient passed at home, receiving the needed care to ensure the best days possible while receiving legendary care. This family and patient chose Front Range Hospice and Palliative Care to provide the care needed because we focus on patient care. We pride ourselves on our ability to support the choices people make while respecting their wishes. Muffins, candy and other novelty items are not the foundation of Front Range Hospice and Palliative Care and we will never use the smoke and mirror trick to get you to choose us as your palliative care or hospice provider. Honest conversations and excellent patient care will always be the information you receive when calling or meeting with our admissions team.

So I close this blog with this… Choices; in order to make the best choices for you or your loved one, you have to be informed. You have to look past the goodies, the glamor, and the awe, and really ask the tough questions to get the real answers you need to make the best choices for you or your loved one.

 

Please reference our blog: What to ask when looking for a hospice.

https://frhospice.wordpress.com/2016/08/24/what-to-ask-when-looking-for-a-hospice-2/

 

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Communication and Alzheimer’s/Dementia

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One of the most difficult things for families and care giver’s is the change in communication that comes with the progression of Alzheimer’s/Dementia (A/D). Persons with A/D are no longer able to perceive the world as we see it, yet we continue to try to converse and make them understand in the same old ways, creating frustration on both sides of the conversation.

One of the best things I have learned is to stop asking questions!

“What did you do today?

“What did you have for supper?”

“Where do you want to go?”

“Would you like a cup of coffee?”

All these questions create a challenge for those with A/D. Now they have to remember what the question was from the beginning to the end. Then they have to ask themselves questions:

“What is today?”

“Did I eat?”

“Where am I now?”

“Am I supposed to make the coffee?”

This creates turmoil within themselves as they try to determine what they are supposed to say, which often leads to the safest answers possible:

“Nothing.”

“I didn’t eat.”

“I don’t want to go.”

And of course, the safest answer of all, the one that will always protect them, the reflexive,                                  “NO”

Instead learn to make positive statements:

“It looks like you had a great day today!”

“Supper is yummy! You only have a little bit of corn left and you are finished!”

“Come with me, I have something to show you.”

“I’m going to have a cup of coffee. I made you one just as you like it.”

It is not easy to learn to converse in statements, but with practice it will lead to less stress for all parties involved.

One other quick tip is: Please don’t try to correct the person with A/D. Just be present in their reality, accepting where they are, in their world, at this moment, and enjoying wherever the interaction takes you!

The Rev. Deborah Hanson, Deacon, RN

Owner: Landmark Memory Care

www.landmarkmemorycare.com

720.537.9355

 

 

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Contented Dementia

dementia

By: Cyndy Luzinski first published 12/22/16, revised 6/1/2017

Dad was a brilliant researcher and fisherman, but he was an even better father.  So, when he shared his concern with me several years ago that his thinking was foggy, I started to do some research of my own.  I realized we were headed on the dementia journey, not knowing at the time where the journey would take us.  With divine timing and circumstances, three weeks after Dad shared his frustration with me, I was sitting down for tea in London with Penny Garner, the woman who developed the “Contented Dementia” approach used in the UK for dementia care.    (© CONTENTED DEMENTIA TRUST )

I learned from Penny that the horrid image of the rocking chair occupied by an old man shutting out the world, with his eyes closed and his arms folded across his chest rocking back and forth did not have to be the reality of dementia.  Penny explained that the primary difference between people with dementia which affected their memory now and the people you knew them to be 20 years ago is in their ability to efficiently learn new information.  Using the non-medical analogy of the SPECAL®  Photograph Album,   Penny shows how our minds, specifically our memory systems work.  The analogy helps me understand that the facts of new information are not stored in the mind of someone with dementia; it explains why feelings become increasingly more important than facts for the person with dementia; and it explains why cognitive loss makes emotional and spiritual needs more apparent.

Access to recent facts is required in order to use “common sense.”  People with dementia may not have access to those recent facts, so care partners who are humble enough to realize that, use what Penny refers to as “SPECAL® sense.” (S-P-E-C-A-L—SPecialized Early Care for ALzheimer’s).   SPECAL® sense begins with living by 3 Golden Rules:  1. Don’t ask direct questions (Learn to rephrase questions into statements that encourage responses rather than demand responses.)  2. Learn from the expert (The person with dementia is the expert.  Pay attention to the questions he or she asks because that tells you what is important to him/her.   3. Don’t contradict.  (Don’t correct or criticize.  If the person with dementia needs to use facts that are 30 or even 50 years old in order to bring context to what he or she is feeling today, we need to be humble enough to go along with it so that we don’t cause unnecessary anxiety.  Being kind is more important than being right.)

The Contented Dementia approach is simple and effective. However, many other person-centered and relationship-based philosophies and approaches exist for dementia care.  What the good ones have in common is this: We cannot provide person-centered or relationship-based care without investing time to KNOW the person.

Hopeful research is underway across the globe for cures and medical treatments for various causes of dementia.  Until cures and more effective preventive and maintenance treatments are found, we who are serving as care partners or senior health care professionals, CAN learn and practice the 3 Golden Rules NOW to provide the greatest contentment and joy for those living with dementia.  WE are the ones who need to change.  WE are the ones who need to study what responses produce the greatest sense of well-being.  WE are the ones who need to know who our person with dementia was at his/her finest hour.  WE are the ones who need to communicate to everyone who comes in contact with our person, key information they need to help the one with dementia make smooth transitions throughout the day, indeed, throughout a lifetime.  WE are the ones who can “make a present of the past” ® to help our friends and loved ones with dementia thrive.

Cyndy Luzinski, is an advanced practice nurse and dementia practitioner who has a passion for helping people with dementia and their care partners live with hope and joy. She facilitates memory cafes and a dementia care partners’ support group in Northern Colorado.  She is the founder of the volunteer initiative and non-profit organization called “Dementia-Friendly Communities of Northern Colorado.®”  This initiative leverages existing community resources and activities and provides training and support so that people walking the dementia journey, in our communities, don’t have to walk alone.

As a member of Eldercare Network, Cyndy will be presenting on person-centered care approaches and Contented Dementia strategies at the Fort Collins Senior Center, July 13 5:30-6:30, and at the Loveland Library, July 20 5:30-6:30 pm.

For more information see DementiaFriendsNoCo.org or the “Dementia-Friendly Communities of Northern Colorado®” Facebook page.

 

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Family Experience Satisfaction Survey Results

Front Range Hospice and Palliative Care, your leader in Making Best Days Possible and providing Legendary End of Life Care once again comes out on top. Front Range Hospice and Palliative Care has been conducting post death family experience satisfaction surveys for years (see the image below for the most recent available data).

If you would like more information about Front Range Hospice and Palliative Care, or if you would like to see our Family Experience Satisfaction Survey Results on an ongoing basis please call 303-957-3101 or 970-776-8080 or email us at info@frhospice.com.

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National Hospital Week

hospital

National Hospital Week celebrates hospitals and the women and men who support the health and well-being of their communities through dedication and compassionate care from the heart.

In 1921, U.S. President Warren G. Harding declared the first National Hospital Day. He picked May 12, Florence Nightingale’s birthday, to honor the famed nurse who set initial standards for hospital quality during the Crimean War of 1854.

President Harding declared the special day as an occasion to open hospitals across the United States and Canada to allow staff to educate visitors about medical examination and treatment and to distribute health care literature and information.

This publicity campaign was conceived by Matthew O. Foley, managing editor of the Chicago-based trade publication Hospital Management, in the wake of the 1918 Spanish flu pandemic.

The devastating epidemic killed an estimated 50 million people worldwide, including more than 675,000 Americans.  Foley sought to rebuild trust in the city’s hospitals as well as to draw attention to broader crises facing health care. A May 1921 Canadian Medical Association Journal editorial outlined those problems:

War influenced day’s focus

National Hospital Day 1945 addressed a different set of challenges – a country still reeling from the Great Depression and still at war with Japan; victory in Europe was declared May 8, 1945. San Francisco Mayor Roger Lapham proclaimed National Hospital Day as a date to honor volunteer and professional workers for what the mayor called “the splendid record for health in San Francisco during our fourth year of war”.

Hospital Day becomes Hospital Week

In 1953, National Hospital Day was expanded to National Hospital Week to give hospitals more time for public education about medical care.

Join us and take this year’s National Hospital Week as an opportunity to thank all of the dedicated individuals – physicians, nurses, therapists, engineers, food service workers, volunteers, administrators and so many more – for their contributions.

 

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National Nurses Week

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The Nightingale Pledge, also known as the Nursing Hippocratic Oath,

“I solemnly pledge myself before God and presence of this assembly;

To pass my life in purity and to practice my profession faithfully.

I will abstain from whatever is deleterious and mischievous and will not take or knowingly administer any harmful drug. 

I will do all in my power to maintain and elevate the standard of my profession and will hold in confidence all personal matters committed to my keeping and family affairs coming to my knowledge in the practice of my calling.

With loyalty will I endeavor to aid the physician in his work, and devote myself to the welfare of those committed to my care.”

Nursing is the nation’s largest health care profession with more than 3.1 million nurses practicing nationwide. Despite its large size, many more nurses are needed into the foreseeable future to meet the growing demand for nursing care. Nurses comprise the largest single component of hospital staff, are the primary providers of hospital patient care, and deliver most of the nation’s long-term care, home care and hospice care.

Most health care services involve some form of care by nurses. Although 62.2 percent of all employed RNs work in hospitals, many are employed in a wide range of other settings, including private practices, public health agencies, primary care clinics, home health care, outpatient surgicenters, health maintenance organizations, nursing school-operated nursing centers, insurance and managed care companies, nursing homes, schools, mental health agencies, hospices, the military, and industry. Other nurses work in careers as college and university educators preparing future nurses or as scientists developing advances in many areas of health care and health promotion.

Though often working collaboratively, nurses do not simply “assist” physicians and other health care providers. Instead, they practice independently within their own defined scope of practice. Nursing roles range from direct patient care to case management, establishing nursing practice standards, developing quality assurance procedures, and directing complex nursing care systems.

With more than four times as many nurses in the United States as physicians, nursing delivers an extended array of health care services, including primary and preventive care by advanced, independent nurse practitioners in such clinical areas as pediatrics, family health, women’s health, and gerontological care. Nursing’s scope also includes care by clinical nurse specialists, certified nurse-midwives and nurse anesthetists, as well as care in cardiac, oncology, neonatal, neurological, and obstetric/gynecological nursing and other advanced clinical specialties.

Over the years, the field of nursing has maintained the highest standards with a patient center focus. A recent survey from Gallup finds that nursing is the most trusted profession in the United States, with respondents rating nurses highest for honesty and ethics. The telephone survey of 805 adults gauged respondents’ attitudes toward a number of popular professions. This year’s rating is the highest since 1999 when the profession was first included in the poll. The one year nurses didn’t top the list? It was 2001, after the terrorist attacks of 9/11, when firefighters were included for the first and only time and scored higher. Gallup conducts the telephone survey in late November each year.

So, before this year’s survey begins all of us at Front Range Hospice and Palliative Care wish all nurses a career filled with compassion, growth and above all self-enrichment. Happy Nurses Week!!!!

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