What to Expect During the Hospice Journey

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By: Lucille Rosetti

When someone you love is entering hospice care, it can be hard to know what to expect.  If you haven’t been in this situation before, you might not even know what questions you want to ask, only that the path is unfamiliar.  I have assembled some important information to help you navigate the journey and feel more at ease.

What is hospice?

When someone starts hospice, this means doctors have determined that person could be in the final stages of life.  When starting hospice, both the patient and family have agreed to put quality of life over curative treatment.  Hospice provides peaceful methods for managing end-of-life pain to help your loved one savor the time they have left.  Your loved one will either remain at home or in a care facility.

If you haven’t done so already, it’s important to talk with your loved one about end-of-life arrangements.  Reader’s Digest points out this conversation can bring a surprising amount of comfort to you both, putting minds at ease.  It’s also important to know where to look for critical documents such as a will, medical durable power of attorney, CPR directive, and so forth.  If your loved one isn’t sure about the paperwork, locate it before it is needed and if you are unable to locate the appropriate documents you can initiate new ones.

Comfort in the care team

The hospice care team is comprised of various personnel who will work together to ensure your loved one’s optimal quality of life.  Doctors, nurses, CNAs, chaplains, and social workers typically play an active part in helping with hospice care.

Hospice social workers often play a particularly integral role, evaluating your loved one’s needs and desires, and developing a plan to meet them.  Don’t be afraid to ask questions about their background and education, since familiarity with their qualifications can put your mind more at ease. As an example, these individuals must complete an accredited Master’s of Social Work program.  Numerous universities throughout the U.S. provide classes both online and on campus, and in the course of completing their requirements, hospice social workers often perform anywhere from 900 to 1,200 hours of field work.

Throughout the hospice stay, the social worker will help coordinate the care team. Your hospice social worker can help with understanding the physical process of dying, and chaplains are often called upon for spiritual concerns.  The multidisciplinary approach of hospice helps alleviate distress, as well as pain and other symptoms.  Your loved one might receive a variety of supportive services while in hospice, such as special dietary considerations, prescriptions, or counseling.  If a potentially treatable issue should arise, such as a bladder infection or pneumonia, it can, in most cases, be treated.

End-of-life symptoms

If you have never been with someone who is dying before, it can be helpful to know how to recognize the signs someone has reached the end of their life.  As Verywell Health explains, there are 12 symptoms someone has entered the dying process, which are:

  • Pain
  • Shortness of breath
  • Anxiety
  • Reduced appetite and thirst
  • Nausea or vomiting
  • Constipation
  • Sleeping more
  • Changed social interaction; more withdrawn or more attached
  • Delirium or restlessness
  • Cold hands and feet
  • Mottled skin
  • Rattled breathing

When your loved one experiences these symptoms, it’s important to be accommodating.  The team can help with pain management, anxiety, and other symptoms, and if your loved one prefers time alone or more time with family and friends, try to respect those wishes. Under most circumstances, physical contact during the last moments is both acceptable and encouraged, and can console both you and your loved one.

The hospice journey is oriented toward your loved one’s peace and comfort.  While the patient is the focus, it’s important for family members and friends to learn what to expect.  The team is there to support your loved one, and you can feel more at ease through questions, understanding, and preparation.

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Your Own Memorial: How to Cope with Loss from a Distance

blogPhoto by Kristina Tripkovic on Unsplash

Guest Blogger: Janice Miller

When you’ve lost a friend or family member but you live a long distance away from them, it’s not always possible to make arrangements to be there for their memorial. You may not have the travel funds or be able to get the time off from work you need to get there — especially if the death was sudden. This can lead to feelings of guilt and helplessness on top of the many emotions associated with grief. That’s why it can be very helpful to lend a helping hand to those mourning in whatever way you can. Additionally, finding a way to honor to your loved one’s memory yourself can be a powerful source of healing and closure.

Managing Your Own Grief

If you don’t take care of yourself, you can’t care for anyone else. Whether you’re a novice when it comes to losing people or you’ve dealt with grief before, it’s never easy. Make sure you are caring for yourself and keeping up healthy habits that support your self-care habits and physical and mental well-being. It’s okay to let yourself feel bad when thinking about your loss, but balance out the time you spend grieving with activities that make you feel good. Exercise to get a rush of feel-good endorphins and release any stress you may be carrying. Enjoy the mood-boosting benefits of hanging out with your pets. Throw a small dinner party and nourish yourself with good food and company. Read to de-stress, get in touch with your emotions, and improve sleep. Whatever it is that comforts you during this difficult time, pursue it while avoiding unhealthy coping mechanisms like drinking, compulsive spending, and comfort eating.

Helping from Afar

The key to helping your grieving loved ones when you can’t be there in person is communication. Get in touch with one contact person with whom you can coordinate and ask if there is anything that the family needs. They may be able to include you on a meal train or ask you to contact other friends who do not have received the tragic news yet. It’s best to have a single point-of-contact rather than trying to coordinate with multiple people because the simplicity cuts down on the chance of miscommunication.

There isn’t one best practice for what to do when you miss a funeral. You can send a sympathy card or flowers, but it really depends on your style. Some people find that cards and plants are wasteful and prefer to donate to a charity in the deceased’s name. If you have the funds available, a great way to help is by paying for housekeeping services for the spouse or parents of the deceased. People who have lost an immediate family member often neglect everyday chores while they adjust to their new reality. Having someone come in to help with these tasks ensures they aren’t surrounded by stress-inducing messiness while they grieve.

A Long-Distance Memorial

Helping the loved ones they left behind is a wonderful way of honoring the deceased’s memory. However, finding ways to commemorate your loved one yourself can also be a helpful catalyst for moving on. Think of a way to do it that is both unique while reflecting your friend or family member’s values. For instance, if they were a staunch environmentalist, consider planting a tree in their memory. Or, if they left behind a young child with a bright future, set up a college fund where people can contribute. Or, simply spend a day committed to doing things that you loved to do when together and keep their memory with you through every moment. Your memorial should be as personal as your relationship with the deceased.

Grieving from afar isn’t easy, but sometimes it’s necessary and unavoidable. Tend to your own emotions, and keep up healthy habits that contribute to both your physical and mental wellness and self-care practices. Do what you can to help from afar, whether that’s sending food or contacting friends so the family doesn’t have to. Finally, make time to do a small memorial for yourself where you honor the deceased and provide an opportunity for closure.

 

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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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Improving Palliative Care in Emergency Medicine

ED-Sign

By Victor Montour

Patients with a serious illness are likely to find themselves in an emergency department (ED) at some point along their trajectory of illness, and they should expect to receive high-quality palliative care in that setting. In the last five years, emergency medicine has increasingly taken a central role in the early implementation of palliative care. Widespread integration of palliative care into the day-to-day practice of emergency medicine, however, is often jeopardized by the demands of many competing priorities.

Although the ED is not considered an ideal place to begin palliative care, hospital-based physicians can assist in eliciting the patient’s goals of care and discussing prognosis and disease trajectory.

There has been and continues to be a large movement to educate emergency physicians on end-of-life care and improve palliative care in emergency medicine, leading to clinical practice guidelines. In reality, because of the acute symptoms that are often accompanied by significant emotional overtones and disposition issues, an emergency medicine physician, hospitalist or intensivist should quickly contact a community based palliative care team for consultation. Many patients present with serious and unrelieved symptoms such as pain, dyspnea, nausea, and vomiting that were not well controlled in the outpatient setting without a community based palliative care program involved. The ED or hospital may be the only option for them to receive intravenous (IV) fluids or medications, as well as immediate access for acute imaging or access to specialists, for example, radiation oncologists. Even if the patient’s goals are clearly non-aggressive, the patient may arrive in the ED because of family distress over uncontrolled symptoms.

Emergency room physicians are in a unique position to have early conversations can help with the identification of patients who may need palliation, discussing prognosis, eliciting goals of care and directives, symptom management in the ED, and making plans for further care. These efforts have been shown to improve outcomes and to decrease length of stay and cost in the hospital setting. The focus of palliative care is relieving “patient” symptoms and family distress, honoring the patient’s goals of care, and assisting in transition to a supportive approach and placement where this may be accomplished in the most conducive environment for the patient and family.

Front Range Hospice and Palliative Care has vast experience working with emergency room physicians and staff to meet the symptom management needs of patients in the communities we serve. If you or someone you know finds themselves in the emergency room, remember to ask the doctor to make a referral to Front Range Hospice and Palliative Care for palliative care services.

Characteristics of Patients Needing a Palliative Care Consult:

  • Patients with a serious, life-threatening illness and one or more of the following need a palliative care consult.
  • Bounce-Backs – The patient makes more than one ED visit or hospital admission for the same condition within a few months
  • Uncontrolled Symptoms – ED visit is prompted by difficult-to-control physical or emotional symptoms.
  • Functional Decline -There is decline in function or worsening of feeding intolerance, unintentional weight loss, or caregiver distress
  • Increasingly Complicated – Complex long-term care needs require more support.

Other patients that may benefit from early hospital medicine or palliative care consult include transfers from a long-term-care facility; patients with metastatic or locally advanced, cancer; patients with out-of-hospital cardiac arrest; advanced dementia patients; and frail, elderly patients with poor functional status.

Adults with chronic illnesses often visit an ED several times in their last year of life. A study of patients older than age 65 years by Smith et al revealed 75% visited an ED in the last 6 months of life and 51% in the last month, many with repeat visits. The transition community based palliative care, symptom management may greatly change the hospital trajectory of care. Here is the opportunity to initiate further goals of care that may change future plans. Research supports early palliative care in the ED to improve quality of life as well as to reduce costs that may have been associated with alternate treatments. Discussions surrounding goals and plan of care, symptom management, and aggressive pain control are some of the cornerstones of palliative care. Some additional benefits from early palliative care interventions in the ED include resource management, improved satisfaction for patients and their families, improved outcomes, decreased length of stay, less use of intensive care units and less cost, and increased appropriate direct hospice consults.

Goal-Oriented Patient Assessment

A goal oriented patient assessment is the first imperative step to find out why the patient is in the ED and to perform a rapid assessment of their palliative care needs. Emergency medicine physicians can begin goal-directed assessments and plans that can help avoid unwanted treatments, inappropriate resource expenditure, and undue suffering.

For more information about Front Range Hospice and Palliative Care and our Palliative care program call 303-957-3101 or 970-776-8080 or email us at info@frhospice.com

 

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Do You Need Community Based Hospice or In-Patient Rehabilitation?

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By Victor Montour

When someone suffers from an injury or medical trauma, they may need to live at a rehabilitation center or skilled nursing facility for a short period of time. The goal for most people going to in-patient rehabilitation is to help the patient return to his/her maximum functional potential after suffering a life-altering event.

When someone is diagnosed with a life limiting disease they may need to look at a community based hospice. The goal for patients going into hospice is to provide physical, emotional and spiritual support to the patient and family while they enjoy life at home with family and friends while the patient’s disease process continues on a natural course.

In-patient rehabilitation is a rehabilitation service offered to people in a residential setting, rather than to people who travel to a clinic for rehabilitation appointments. These facilities are called skilled nursing facilities (SNF) or In-patient Physical Rehabilitation Centers. In-patient facilities could be located inside a hospital or senior housing, such as assisted living facilities and nursing homes.

These centers provide around-the-clock treatment and supervision. The patient’s progress is continuously monitored. In some cases, in-patient treatment programs stand a better chance of success for patients. Some common types of ailments that might be best treated (check with your doctor for the best advice) include:

  • Fractures
  • Joint injury or replacement
  • Aneurysm
  • Neurological conditions
  • Stroke
  • Arthritis of the spine and other joints
  • Brain injury
  • Nerve impingement
  • Amputation

Community based hospice services are offered to people in a residential home or home like setting. Hospice care can all so be provided in some community facilities. Some of these facilities are called skilled nursing facilities (SNF), senior housing, or assisted living facilities.

Most community based hospice care is provided at home — with a family member typically serving as the primary caregiver.  Medicare has strict clinical guidelines a patient must meet in order to receive hospice care in a hospital setting. This type of hospice care is very rare and should never be considered as the first line of treatment. Some common types of medical conditions that might be best treated in hospice (again check with your doctor for the best advice) include:

  • Stroke
  • Cancer
  • Chronic Obstructive Pulmonary Disease (COPD)
  • Congestive Heart Failure (CHF)
  • Amyotrophic Lateral Sclerosis (ALS)
  • Alzheimer’s
  • Liver Failure
  • Renal Failure
  • Amputation

 

Duration of in-patient rehabilitation treatment varies depending on the severity of the condition and potential for improvement. The key words being potential for improvement. Families and patients should ask their doctors what the potential for improvement is for any treatment. If improvement is low or a decline in health continues then the next question should be, what about hospice?

Generally, significant results can be achieved in either program as long as you are placed in the appropriate program at the optimal time. People should enter into hospice as quickly as they do going into rehab. Hospice care should be a timely choice not a last resort. Currently this concept seems to differ widely depending on the condition being treated and the patient’s involvement in his/her care.

Many times, I see patients going to rehab who have a terminal diagnosis. I always ask myself, is this patient informed? Do they understand their diagnosis? Do they understand the diagnosis they have is terminal? Do they know they could spend their time with loved ones enjoying life instead of being alone or with strangers in a rehab facility?

As healthcare is everchanging it is the patient’s responsibility to know their diagnosis, to know best treatment options and to know when a diagnosis is terminal. Patient’s need to drive the conversation on what they want for care. Ask is hospice or rehab more appropriate? Ask what is the potential of cure or rehab? Let your doctor know what ‘enough’ looks like to you. Talk to your doctor about what you’re willing to do in rehab and what you’re not willing to do. You have to say ‘enough is enough’ when the time comes, so why not prepare people ahead of time.  I have seen many people with a terminal diagnosis sent to rehab and even continue until death because they weren’t fully aware of the choices they had.

You are in charge of your healthcare so take charge and research your options. Educate others on what you want, when you want it.

 

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A Precious Journey

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By Victor Montour

As a community liaison for Front Range Hospice and Palliative Care I’m blessed with many opportunities to meet some wonderful people. Just recently I was asked to meet with the patient and the family at one of our area hospitals to discuss palliative care and what services are provided with Community Based Palliative Care.

The next day I was called by the patient’s son and asked to come to the home to discuss hospice services. When I arrived at the patient’s home he was sitting outside enjoying the morning air, the fresh smell of the morning dew was heavy. I sat with the patient, his son, daughter-in-law and his daughter called in from out of state. I first talked with the patient to establish his goals for medical care. It was profound to discover the patient was asking for someone to talk with him openly and honest about his prognosis. He also was clear that his largest fear was losing his mind. He wanted to remain sharp and in control. After a long conversation with him and his family, reviewing the pros and cons of seeking treatment, the patient wanted to start hospice care.

Over the last week the team from Front Range Hospice and Palliative Care provided legendary end of life care. The patient was placed on daily Registered Nursing (RN) visits to ensure maximum comfort was obtained and maintained. The RN’s were called out to the home, as needed, a number of times day and night to help manage the patient’s terminal agitation. (To learn more about terminal restlessness / agitation read our blog “A Major Distressful Symptom in The Dying”) The nursing team from Front Range Hospice and Palliative Care provided endless support to the patient and the family.

A final call from the family came in the middle of the night informing the on-call nurse that the patient had passed away peacefully in his bed. The nurse made her way to the home and provided one last time the support this family came to expect from our team. The nurse completed her nursing functions and then turned to the family and sat with them a bit and provided them the reassurance they needed to hear.

As a liaison I frequently get calls from families for assistance of various kinds. I received a call from the patient’s daughter-in-law asking to meet with me at 10:00 am. I was asked to come to the home to meet in person with the family. When I arrived, I had the pleasure of meeting with the patient’s daughter from out of town, the son and daughter-in law. The three of them shared with me their experience while on this journey with their father. The wonderful things that the family had to say were just amazing.

They all agreed that their hospice RN Haley was the perfect nurse for their dad. She was amazing, they recounted with me how Haley helped their father get into his camper one last time. They shared that he loved his camper and spent more time in there than the house. The family voiced they will never forget this selfless act of kindness shown to their father.

As we talked more, the family made special mention of RN Heather. Heather brought them a sense of calm with her soft tone and warm smile. They shared that they felt Heather was there just for them, they never felt rushed or felt like she was in a hurry to move onto her next patient.

I could go on and on about this meeting and list every team member that provided legendary care to this patient and family. Over all the meeting was wonderful, they were impacted by this journey they traveled with us in such a positive way that they wanted to share their story. It was important for them to tell their truth and to validate how this experience has impacted them and us forever.

The end of life journey doesn’t have to be a scary. It can be filled with love, laughter, goodbyes and most of all wonderful memories till the end.

 

All of us at Front Range Hospice and Palliative Care send out heart felt thank you to this family and all of the other families for allowing us to be apart of this special time. It is an honor to be at your side during the most intimate time in your life.

If you would like more information about Front Range Hospice please call 303-957-3101 or 970-776-8080 or email us at info@frhospice.com

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Community Based Palliative Care: How does it work?

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By Victor Montour

Palliative Care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.

Community Based Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s and their doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.

  1. Where do I receive palliative care?

Palliative care is provided in a variety of settings including the hospital, outpatient clinic, at home, in assisted livings and nursing homes.

  1. Does my insurance pay for community based palliative care?

Most insurance plans, including Medicare cover palliative care. If costs concern you ask our liaison for a copy of our how to verify your insurance coverage form.

  1. How do I know if community based palliative care is right for me?

Community based palliative care may be right for you if you suffer from pain, stress or other symptoms due to a serious illness. Serious illnesses may include cancer, heart disease, lung disease, kidney disease, Alzheimer’s, amyotrophic lateral sclerosis (ALS), multiple sclerosis, Parkinson’s and many more. Palliative care can be provided at any stage of an illness and along with treatment meant to cure you.

  1. What can I expect from a community based palliative care program?

You can expect relief from symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping. Palliative care helps you carry on with your daily life. It improves your ability to go through medical treatments. It helps you better understand your condition and your choices for medical care. In short, you can expect the best possible quality of life.

  1. Who provides community based palliative care?

Community based palliative care is provided by a team including palliative care doctors, nurses and other specialists.

  1. How does community based palliative care work with my own doctor?

The community based palliative care team works in partnership with your own doctor to provide an extra layer of support for you and your family. The team provides expert symptom management, extra time for communication about goals and treatment options, and help navigating the health system.

  1. How do I get community based palliative care?

Ask for it! Tell your doctors and nurses that you would like a referral to Front Range Hospice and Palliative Care for palliative services. Our liaison will contact you for a no obligation informational.

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