Meeting with doctors and specialists should feel empowering and like you’re a stakeholder in your care team. However, most patients with a terminal or chronic diagnosis feel the exact opposite. The combination of limited appointment times, medical speak, the emotional rollercoaster of handling all you’re hearing, and the desire for healing can mean you embark on a treatment autopia track that runs out of control.

That should never be the case. It’s time to reclaim control of your treatment plan, so you and your family make the right decisions for your values, well-being, and quality of life.

5 Tips To Help You Regain Control Of Your Treatment Plan

Patients are in control of their health and treatment plans and should be treated as such. You should have the power, control, and necessary information and understand all the risks and benefits of prospective treatments, so you make choices that make the most sense for your goals and that honor your body, mind, and spirit.  Reclaiming a treatment plan sometimes means saying no to more treatments. That isn’t always easy at first, but when you compare the quality of life you have now and the quality of life you may gain by ceasing treatments and making the most of the time you have left – you feel empowered and free.

Tell your physicians/specialist you need to regroup

Physicians and specialists are trained to “fix things;” they aren’t always very good at being 100% honest and transparent when things can’t be fixed, or treatments aren’t working (more on that in #5). Being your own advocate and admitting you want to regroup, get clear, or hear blunt truths may be the catalyst for more honest communication with the healthcare team. The first place to start is speaking frankly to the physicians/specialists (or their R.Ns., N.Ps, P.As., etc.) treating your terminal diagnosis. Let them know you’re feeling out of control of your treatment plan and need to regroup. Then state clearly what you’re experiencing. 

• One example might be: “I don’t always understand what you’re telling me about where I’m at and what I can expect from treatment A, B, C. I need more time to digest the information and hear clear opinions about what you recommend.”
• Another could sound like, “I’m feeling X (exhausted, sick all the time, like negative side effects outweigh most benefits, etc.) from the current treatment plan. Am I at a point where the risks outweigh the benefits?”
• Or, “In your opinion, are treatments futile? Should I be looking at ceasing treatment and finding more quality in the time I have left?”

You are the boss, healthcare teams are working for you, and it’s time for treatment plans or palliative care plans to reflect that.

Connect with a patient advocate

Healthcare ad patient advocacy is a rapidly growing field. The fact you’re reading this article, meaning you or someone you love feels out of control or confused about treatment options, proves why.  Healthcare advocates work for you, serving as informed, compassionate ambassadors between you and your family – and healthcare providers. They’re training in navigating insurance and treatment red tape and help you voice your opinion, so you never feel like “less than” due to medical jargon or clinical power dynamics. A patient advocate helps clients review their diagnosis, available treatments, and the medicalese/jargon- acting as an interpreter. They provide experienced, objective ears during appointments, visits, or telehealth connections, so you don’t forget key details. In addition, patient advocates can sit with you and provide a compassionate ear as you express the complicated emotions that arise when one faces end-of-life diagnoses.  Finally, patient advocates ensure you retain complete control of your treatment plan so that your holistic well-being is always at the heart of any treatments you choose, pass on, or opt to end. 

Create an End of Life Plan to guide treatment options

Sometimes the best way to figure out what treatments you want or don’t want is, to begin with, the end in mind. Figuring out what you don’t want means you stake a stronger claim in what you do want. Working through questions to prepare an end-of-life plan provides invaluable information. Sharing the answers with your oncologist, gerontologist, or other specialists helps them get a clearer idea of what treatments resonate with the plan, and which ones place you on an autopia track to things you may not want (long hospital stays, a taxing appointment schedule, feeding tubes or life support, and so on).

Surrender to some important but hard-to-accept truths

Reclaiming control of your treatment plan often means surrendering to essential, but hard-to-acknowledge truths. We often meet with clients who’ve been miserable for months, or even years, because they weren’t willing to accept the truth. They want the miracle; they want the treatment/medication/therapy to heal the unhealable; and they want “more time.” The longer you attach and blindly hold onto the impossible, the more of what was – and is – possible disappears behind you. Bluntly stated: what good is “more time” if you spend that time physically and emotionally miserable, unable to find joy in that time? Stephen Jenkinson, the author of the book Die Wise, speaks succinctly on this point: More time almost never looks or feels or goes the way people imagine it will when they are bargaining for it…More time, when it finally kicks in, is the rest of a dying person’s life, and the rest of that life will be lived in the never-before-known shadow of the inevitability of their dying. In order to reclaim More Time in a way that supports quality time, processing time, and meaningful time with loved ones means accepting:

• There are no magic bullets for a terminal or chronic disease
• Medications and treatments are tools that don’t always work
• When your physical and mental anguish conflicts with the hope of any treatment or medication, it’s time to create a new plan.

Saying no to further treatments may be the most control you’ve ever had

Sometimes treatments work for a while. Sometimes they don’t. Sometimes treatments that used to work stop working. The best-case scenario is creating a forward-thinking treatment plan so you don’t end up at a destination you never wanted to arrive at. The next best thing is recognizing when it’s time to stop treatment, get the support you and your family need for the time you have left, and honor the “Precious Time” rather than the “More Time” paradigm.

Hospice of the Golden Isles Helps Patients Reclaim Control Of Medical Treatments

Scheduling consultations with palliative and hospice care providers is a smart way to begin reclaiming control of treatment and health plans. We’re here to support you no matter what you decide, but the information we have and resources you’ll have access to along the way provide peace of mind as you navigate what feels best or makes the most sense for your next steps forward. Contact Hospice of the Golden Isles to learn more about how we can ease the way. 

Most people who work in the realm of death, dying, and grief would agree that Americans are primarily a death-phobic culture. People fear death, often refusing to talk about it, perpetually putting off making end-of-life plans, and have never seen a person die. As a result, the idea that “death is beautiful” can seem downright impossible.

Moving Toward The Beautiful Sides Of Embracing Death

While it’s true that the physical aspects of death and dying may not always be pretty, and some are downright unappealing, the bigger-picture death process can be incredibly beautiful. However, in our experience as hospice and palliative care providers, we are very clear on what it takes to move toward the idea of embracing death as beautiful. We certainly don’t want to wax poetic here; this is serious stuff. So, if the word “beautiful” repels you, we invite you to replace that with another word, like Natural, Transcendent, Sacred, Meaningful, or another option that resonates, so you don’t get hung up on the semantics. 

Create an end of life plan before you stare death in the face

Most people wait far too long to create an end-of-life plan. In a best-case scenario, people would create end-of-life plans in their early 20s and then revise them every few years and then every year or so after their 50s.  Comprehensive end-of-life plans gently direct you through the most critical questions around advanced medical directives, disease treatment preferences, and clarity around when to cease treatment. They also include questions around where and how you prefer to die. These plans are personally created to honor your values. They also offer great solace to loved ones who can follow your wishes if an unanticipated accident or turn of events renders you incapable of speaking your wishes. So, by creating detailed end-of-life plans shared with close family members and healthcare providers, most individuals feel a great weight lifted from their shoulders, making death feel less stressful or full of unknowns.

Gain an understanding of what happens to the body when we die

The number one thing we hear from patients about their transition to hospice is, “I am afraid of dying…” And pain is a leading cause of that fear. The reality is that dying is not painful. The conditions leading to your death may be painful (injury, disease effects, etc.), but those are all manageable.  The media has done a very poor job of showing what the real dying process is like. They make it look fairly short and tidy, with most people uttering memorable or inspiring “last words.” Most of us don’t die that way at all. And while there can be scary or unpleasant moments, those are manageable when people understand what happens to the body when it dies. 

Connect with palliative and hospice providers sooner rather than later

If you are diagnosed with a terminal illness, connect with local hospice providers. While some people are completely cured, most experience treatments that allow them to live longer – but they’re likely to die from the disease. Connecting with hospice and palliative care providers sooner rather than later means you have information about all of the services they offer and what hospice service is like.  That information is typically very comforting, and while you may not want to enlist their services now, you’ll have an idea of which hospice service to call when you decide to end treatment. The sooner patients and families enlist hospice support, the better quality of life they experience.

Live daily life to its fullest

This does not mean you need to sell everything you own and travel the world (although it might, if that was always your lifeline dream). On the contrary, the thing that creates the most pain and discomfort around dying, once pain management is established, are all of the “things left undone.”  Patients’ dying process is often complicated and made darker by:

• Regrets
• Things they wish they’d done that they never did
• Severed or strained relationships
• Not having the courage or ability to express regrets, apologies, or unspoken anger/hurt

The best way to embrace one’s death is to know that, by and large, you did the very best you could and completed almost everything you wanted to that really mattered. You may need to grieve things done and left undone. It also means having tough conversations to make amends (if necessary) or to let others know how they hurt you and that you want to clean up the relationship.  There aren’t always “happy endings” the way you’d prefer, but the ability to be seen and heard – or to truly see and hear others – provides incredible solace – especially at the end of life. But why wait until then? Anyone can begin living their best life “right now,” making it that much easier to embrace death when it inevitably arrives.

Honoring the natural cycles and rhythms of all life

Nothing lives forever. Not a single thing. Life’s natural cycles and rhythms demand that living things die and make way for new life. Understanding that you are one amazing part of that cycle and rhythm can help you see the reality that while the body may die, your life energy continues fueling what comes next.  Some people call this energy a spirit or soul, while others view it scientifically as an energetic force. But as science teaches us via the first law of thermodynamics: energy cannot be created or destroyed; it simply changes states. The more patients spend time seeing the connections between themselves and the natural world around them, the easier time they have seeing death as natural, necessary, and – yes – even beautiful.

HGI Helps Patients & Families Find The Meaningful In Dying

Would you like to work with care providers who are 100% dedicated to making the dying process as meaningful and beautiful as it can be? Then, connect with Hospice of the Golden Isles. Our team of doctors, nurses, aides, social and spiritual support, grief counselors, and volunteers provides comfort, solace, and quality of life for all our patients and their families.

The medical world operates in a “fix it” paradigm, which is a wonderful thing in most cases. However, we’ve found that the model lacks the wisdom of a long-term, bigger-picture approach when treating terminal or chronic health conditions. 

If patients aren’t careful, they wind up pursuing treatments they would never have in the beginning or participating in treatments that diminish their quality of life in irreversible and regrettable ways.

Things To Consider Before You Stop Disease Treatment That Prolongs Life

Deciding when to stop disease treatment isn’t easy, but it often frees patients and families to enjoy the highest quality and most meaningful life they have left. There are several things patients and families need to consider before stopping treatment. 

Quality of life vs quantity of days left

The question of quality over quantity is something we ponder hundreds, if not thousands, of times in a lifetime. When it comes to treatments that prolong life, quality vs. quantity is the primary consideration.  We highly recommend that everyone – terminal illness/disease or not – ponder deep, big questions about their End-of-Life Plan. Your answers become the guideposts for which treatments you choose – and for how long – when presented with a terminal diagnosis. Questions include things like:

• What does quality of life mean to you? 
• What kind of life do you not want to live? 
• How many times (if any) do you want to be resuscitated? 
• How long would you want to be on a feeding tube or life support (if at all?)
• Where do you want to spend the end of your life (hospital? Home? Hospice house?)

These are all earnest questions, but they should be asked as early in the treatment phase as possible.  The answers will help to shape your decisions around when to stop treatment. Comfort and quality of life trump the number of days you have left if you’re spending them unconscious, unable to do things you enjoy, without the ability to taste/enjoy good food, in physical discomfort/pain, or separate from the ones you love.

How Many Times (And How Long) Have You Pursued Treatment?

The American Board of Internal Medicine (ABIM) started an organization called Choosing Wisely in 2012 to promote conversations between clinicians and patients – helping patients choose care that aligns with their ultimate goals, values, and end-of-life preferences.  Some of the basic questions used to guide patient/clinician conversations are around whether the treatment option(s)are:

• Supported by evidence
• Not duplicative of other tests or procedures already received
• Free from harm
• Truly necessary

And, when it comes to cancer treatments, they state “If you have had three different treatments and your cancer has grown or spread, more treatment usually will not help you feel better or increase your chance of living longer. Instead, more treatment could cause serious side effects that shorten your life and reduce the quality of the time you have left.” That wisdom applies to many treatments used to prolong life for patients with a terminal illness or disease. Choose wisely, and be brave enough to say “enough” when the prognosis won’t improve. 

How much are you suffering from the treatment?

Sometimes, the suffering from the treatment doesn’t make sense for the disease’s prognosis. It’s one thing to suffer for a short time because studies show you’ll gain months or years of health and strength again. It’s another to hear a doctor admit that your days are numbered even with treatment. The pull to do anything to live longer is strong, but at what cost? Weigh the suffering from the treatment with the suffering from the disease. In many cases, patients decide they’d rather be in less pain and enjoy life more for a shorter time than suffer indefinitely from treatments that mean most of their time is spent in bed, feeling unwell, or in physicians’ offices.

Have doctors or nurses mentioned hospice?

As we mentioned, our healthcare system is better at trying to fix something than acknowledging when something can’t be fixed anymore. Unfortunately, this inability of many doctors to be straightforward in hard ways keeps patients on a treatment autopia track they wouldn’t have chosen if they knew where it would lead. If your doctor or nurse has mentioned hospice, pay attention. That is a sign that treatments aren’t going to make you better, or they feel your quality of life will diminish from here on out. It means care providers feel you’ll benefit more from hospice services than treatments. Plus, hospice services bring everything you need – including medical support and equipment – wherever you want.

Is pursuing treatment an excuse to avoid the reality to stop disease treatment?

Are you suffering through treatments because you haven’t been able to face the reality of a terminal diagnosis? The fear of suffering and death is so powerful that people will voluntarily choose suffering and treatment instead. However, a terminal diagnosis doesn’t go away. So, avoiding your fears, anxieties, or concerns around the end of your life only builds up – rather than diminishes – if you ultimately know treatments aren’t saving you. Hospice and palliative care teams are here to support you. With our services, you can take advantage of palliative comfort care while pursuing current treatment plans. In addition, you’ll have access to physicians, nurses, social workers, therapists, spiritual counselors, and others who can help you through your decisions about whether or not to stop treatment. This support provides tremendous relief to our clients and their families, helping them to make decisions that come from their truest desires – rather than fear.

Stopping Treatment For A Terminal Disease

Are you beginning to feel like enough is enough for your disease treatment plan? Are you interested in learning more about what it would mean to stop disease treatment and pursue the highest quality of life for the time you have left? If so, Hospice of the Golden Isles is here to support you. Contact us to schedule a consultation. We are committed to providing peace of mind, and invaluable support, for those facing end-of-life decisions.

Caregiving for a spouse, parent, or close family member is a noble job – and it’s also an exhausting one. Those who serve as primary family caregivers are at risk for caregiver fatigue, which leads to burnout. 

In addition to compromising your own health and well-being, caregiver fatigue and burnout compromise the level of care your loved one receives. You simply cannot provide patient, unending care around the clock if you aren’t taking care of yourself.

7 Red Flags Indicating Caregiver Fatigue

The following are seven of the most common red flags indicating caregiver fatigue. If they go ignored, the fatigue progresses into full-fledged burnout. This can result in physical illness or disease, not to mention mental and emotional breakdowns. In worst-case scenarios, unchecked caregiver fatigue also results in neglect or abuse of the patient.  If you or someone you love is a primary caregiver, pay attention and seek support if you notice any of these signs.

You can’t keep your eyes open

Not surprisingly, chronic exhaustion is one of the first signs of caregiver fatigue. In many cases, this is the result of being sandwiched as a caregiver between the needs of children who are still at home in addition to the one you’re caring for. Sleepless nights may also contribute. Figuring out how to get the rest you need is imperative.  That said, sleeping all the time is another sign of caregiver fatigue, as well as depression, so aim for the regular seven to nine hours per night if possible – and schedule an appointment with your healthcare provider if you’re suffering from interrupted sleep or difficulty waking up.

Difficulties concentrating or focusing

A tired brain isn’t as efficient as a well-rested one. Most people with caregiver fatigue have a hard time focusing on any one thing. They may feel constantly scattered or notice they’re going from one thing to the next without finishing any of them. 

Forgetfulness

Did you forget a regular meeting, appointment, or calendar date? Are you struggling to remember the exact date or which day of the week it is? Maybe you’ve found yourself driving further up the road than you meant to because you missed the regular turn into your neighborhood grocery store or bank.  Caregivers often feel like they’re at risk for a dementia diagnosis because their memory stops working like it used to. This is rarely the sign of a medical condition and typically indicates you are overtired and overworked – and that you need additional support! 

Moodiness (depression, irritability, anger, anxiety)

Most caregivers experiencing fatigue or burnout look back and see how their moods shifted and became increasingly erratic. Part of this is due to the inevitable fatigue accompanying caregiving when you don’t get the respite care you need. However, never underestimate the power of anticipatory grief. If you’re caregiving for someone in a terminal situation, you have to put on the business face while you’re grieving the person/relationship you’ve already lost or anticipate losing. Those feelings deserve to be felt and expressed via healthy outlets. 

Overconsumption of food/alcohol/medication to numb out

Many caregivers slipping from fatigue to burnout begin overeating (or undereating) or using unhealthy amounts of alcohol or recreational drugs as an escape. Your health and well-being are a priority – which requires a balanced diet and regular exercise – sans excess alcohol or drugs. However, your mental clarity/sobriety is also essential to be a good caregiver. Be accountable and reach out for support if you notice you’re choosing unhealthy coping mechanisms.

Inability to maintain personal meetings, appointments, and social engagements

When was the last time you went to dinner or coffee with a good friend or upheld the regular rhythm of your personal healthcare, grooming, or social appointments and engagements? If you skip more events than you attend, it’s time to enlist support. Caregiving requires balance or burnout is inevitable.

Feelings of anger or resentment towards the one you care for

This is so common, and it’s absolutely nothing to be ashamed of. Naturally, you feel burdened, frustrated, or resentful as a result of your new caregiving role. These feelings are even more expected if you’ve been caregiving for several months or longer. However, these feelings are also a sign of caregiver fatigue or burnout. They put both you and your loved one at risk. Seek help ASAP to ensure the time you spend with the one you care for is as compassionately dedicated as it was in the beginning.

Five Things You Can Do To Relieve Caregiver Burnout

Here are five things you can do right now to relieve caregiver burnout and get yourself back in balance again.

Contact a hospice or palliative care provider

Hospice and palliative care providers are here to support you. We have an incredible team of physicians, nurses, nursing aids, spiritual counselors, and volunteers who dedicate our lives to helping caregivers just like you. You’ll be amazed at how quickly the quality of life increases when you have a dedicated hospice care team put in place.

Reach out to family and friends

Caregivers need bonafide time off, just like everyone else. Reach out to family, friends, or church peers and ask if anyone can provide a few hours a week to take over. Once a schedule is established, you’ll be able to get out of the house and take care of yourself. At first, that might look like taking a shower that’s longer than five minutes or taking a walk in a favorite park. Pretty soon, those respite care shifts will mean having a good chat and a coffee or lunch with a friend, taking a long nap, having your hair or nails done, or attending your child/grandchild’s extracurricular activities. Respite care is game-changing.

Resist the urge to micromanage

Caregiving can become a double-edged sword if you’re not careful. You want to get away but find you can’t because you suffer under the illusion that “nobody can do it as good as I can…” and the idea that the whole kit and kaboodle will go down the tubes without you. In fact, that’s not the case at all. Nobody can do it like you, but plenty of us can do it well enough to keep things together while you get a break. We promise!

Utilize hospice volunteer offerings

There is a lot to take in when you’re going through the initial intake process and getting used to how hospice care works. However, don’t overlook the offer to provide volunteers. Hospice volunteers go through intensive training, and their goal is to support our clients and their families in any way they can. This can include a long list of options, such as respite care, grocery shopping, dog walking, gardening, meal delivery, plant watering, and more. Take advantage of these FREE services, which free you up to take better care of yourself.

Focus on healthy foods and regular movement

Your body requires healthy nourishment and regular movements. Make it a point to have plenty of healthy, easy-to-grab, or heat snacks and meals. This ensures you can eat when you need to and get the vitamins and minerals your body needs to do the good work you’re doing. Consider using something like Meal Train, which allows family and friends to bring meals, snacks, or schedule food delivery as requested by the calendar. If you aren’t able to get out of the house to exercise just yet, take advantage of the many YouTube videos that are out there and find 10 or 20 minutes each day to move, stretch, get the heart rate up, and move those stress hormones right out of your system.

Take Advantage Of Support From Hospice of the Golden Isles

Are you suffering from caregiver fatigue and burnout? Don’t waste another minute. Contact the team at Hospice of the Golden Isles. We’re here to support you in any way we can, including putting you in touch with the many caregiver support resources available in our area. 

The nostalgia and spirit of the holiday season offer a special opportunity for patients on hospice and their family members to find meaningful ways to spend time together – even if that means shifting and adjusting the morning holiday celebration itinerary.

Holiday gatherings and family traditions offer the ideal window through which healing, processing, and the making of priceless memories can take place. Despite the mixed emotions and complexities, there are many ways to celebrate the holidays on hospice.

Holidays On Hospice: 6 Ideas to Create Meaning, Memories, and Joy

Also, please know it’s perfectly normal and expected to feel a deep sense of sadness or grief as you approach the holidays with a spouse or close family member on hospice. For many, it will be the last time you get to connect and share age-old traditions. Resist the urge to “fake it” or act like things are other than they are.  Your sadness and grief are anchored in love, history, and shared connection. Those feelings may also reflect emotions unprocessed or words unspoken. Therefore, we invite you to view the holiday season as a powerful portal you can enter to connect with a loved one in hospice in deep and meaningful ways. Here are some of our suggestions for how to celebrate the holidays on hospice.

Remain attuned to the needs of the one on hospice

Depending on where someone is at in their journey with hospice, they may be raring to go, taking advantage of every waking minute. OR, they may be in their last weeks or months, often indicated by a greater need to sleep, withdraw from the outside world, and spend quiet time in inward reflection.  This status can change rapidly, or without warning, so the main goal is to remain attuned – and in tune – with how your loved one is feeling. Your hospice team is a fantastic resource, and our nurses, volunteers, and other staff members can help you assess what makes the most sense for this year’s holiday planning.

Scale it down to the most important parts

One of the most important things to remember is that people on hospice are typically chair- and/or housebound. Things slow down, and loud, boisterous, or fast-paced activities are challenging. Hospice patients tend to tire more easily and need far more sleep in between energy bursts.  With that in mind, ask what parts of the holiday celebration appeal most to them and then find ways to create a scaled-down version. This may look different depending on the person’s favorite holiday traditions, who is local and who’s not, or where they’re living (people in a hospice house setting have different options than those living at home).  For example, it may make more sense to:

• Bring parts of the holiday traditions to the one you love, rather than going to heroic efforts to bring them to events or places that cannot accommodate their current needs.
• Check in with your loved one and their primary caregivers (or hospice team) to learn which times of the day are best for activities. Family events/plans may need to shift this year to accommodate when mom or grandad are most likely to feel social.
• Bring them one or two of their favorite parts of the holiday meal rather than a full meal (waning appetite is very common, and forcing food can create problems for a body that is no longer able to digest and process it anymore).
• Using video chat and hangout options to connect with out-of-town loved ones or to connect to the group events at specific times. Keep in-person visits solely to those requested by the patient.
• Add a few meaningful holiday decorations (preferably the ones they request or ask for) rather than creating a space that is visually overstimulating. Consider using dimmers to keep lights ambient rather than exciting.
• Work together going over old photos and albums, organizing and labeling them if key names or dates are missing. This can be a wonderful way for those on hospice to process their lives, share stories you haven’t heard before, or mend old rifts or wounds.
• Have people write letters saying all they’ve always wanted to say to be read as your loved one is able over the course of the holiday season.

This list could go on and on, but use the ideas to accommodate your loved one’s needs, wants, and cultural preferences.

Don’t focus on a single day (flexibility is key)

As we touched on above, the status of a person on hospice is ever-changing. Some days may sound good in theory, but then one rough night or a series of bad days can make it impossible for your loved one to participate the way they want.  Flexibility is key, and everyone involved should be prepared to surrender their set intentions to what may need to happen instead. Scheduling little things that can easily fit into a window of days is better than putting all of your holiday eggs in one day’s basket. Nobody should take it personally if a plan or event can’t occur. This is the way it goes sometimes, and the ability to flow with it provides the most ease for everyone involved.

Prioritize calm over chaos when celebrating holidays on hospice

Again, things move slower on hospice, and odds are your loved one now dwells in a much quieter mode of existence. Leave the chaos and excitement of the holidays for other locations and bring the more peaceful, calm, and rejuvenating traditions to the ones celebrating the holidays in a hospice setting. This is especially true for anyone with Alzheimer’s or dementia, or who is not as coherent as normal. Calm and soothing is always best, but feel free to pep things up if your loved one is feeling energetic or requests specific activities. 

Being there in silence may be the best gift you can give

Don’t underestimate the power of being present and spending time with someone you love in mostly silence. You can create a playlist of your loved one’s favorite holiday songs to play softly in the background. They may also enjoy sitting together and rewatching their favorite holiday movies (or home movies).  Don’t be surprised or take it personally if they drift in and out of consciousness, as sleep is the time when those who are dying process their lives and make peace with what’s behind them – as well as what’s ahead. Use this time to quietly and concisely express anything you feel needs to be said and invite them to do the same. These conversations can be remarkably healing and are one of the most important labors of love at the end of a person’s life.

Don’t forget about your loved one’s everyday care needs

Again, the hospice team and caregivers are a wealth of support. However, it’s not uncommon for families to take over the reins to have private quality time with their loved ones and give caregivers the chance to spend the holidays with their families. Regardless, it’s easy to forget that those on hospice have different care needs than they used to:

• Regularly check in to ask if they need anything or offer breaks/rest periods.
• Do they have access to regular privacy to use the bedside commode, or have their adult incontinence briefs changed?
• Are you allowing them enough time to rest in between visits or any activity?
• Are people respecting their lack of interest in eating or drinking so they don’t become physically uncomfortable or ill?
• Is someone setting a timer for medication reminders?
• Have they spent far longer than usual out in the living room or sitting upright? Give them time to lie down and rest again. 

Let Your Hospice Team Support Holiday Planning

Would you feel more comfortable getting first-hand or personalized advice about how to celebrate the holidays on hospice without overwhelming your loved one? The team at Hospice of the Golden Isles is here for you. Our team can work with you and our client to create a meaningful holiday for everyone while honoring and prioritizing the needs and well-being of your loved one.

One of the most common questions hospice nurses and staff receive is, “How will we know when they’re dying?” It’s challenging not to have a clear answer to the question. We never know if a person is truly dying until they die. Everyone’s journey and transition between living and dying are different.

However, what we can do is educate families about the dying process and some of the common signs that indicate a person is actively dying. Again, this won’t be a day, hourly, or minute prediction. Instead, recognizing these signs and being willing to face them with an open heart can completely transform an individual and family’s story.

Signs A Loved One Is Dying

To be clear: when we’re talking about the signs a person is dying, we’re speaking of a long-term death, as opposed to sudden death (unpredicted heart attack, aneurism, car accident, etc.) Most of the signs a person is dying occur in stages, some of which arise years and months before they die. Because our culture tries to ignore these signs or pretend that all medical issues can be fixed (they can’t), individuals and families are often shocked when death comes far faster than they were prepared for. This can lead to devastating emotional consequences, including not being prepared for all of the physical, mental/emotional, and practical aspects of dying and after-death care. The better able you are to have conversations about end-of-life, dying, and preparing for the future, the less stressful the process will be.

Years & Months Before Death: The Diagnosis

Most people die from a progressive disease or old age. In these cases, the signs a person is dying can start months or years beforehand. For many, it starts with an initial prognosis or diagnosis. You have chronic heart disease, cancer, Parkinson’s, ALS, COPD, etc.  Yes, there are treatments. Yes, you can take medication to notably minimize symptoms and side effects and to extend your quality of life. The fact remains that in most cases, that diagnosis is the first sign that you are dying.  Now, we’re all dying, and (in most cases) none of us know the exact “how” of the matter. A loved one may have a stage 4 cancer diagnosis that has you reeling, and they outlive you because you have a sudden heart attack or are hit by a car while crossing a street. None of us ever really know.  However, a terminal diagnosis should serve as a wake-up call. Being diagnosed with a disease that may be curable/treatable but may not is also a chance to prepare. An 80th, 85th, or 90th birthday is another sign you’re closer to dying than not. You and your loved ones are best served by recognizing this is “the first sign you’re dying,” and begin making comprehensive end-of-life plans that honor body, mind, and spirit. Rather than being scary or heartbreaking (which it may be at some level), we can guarantee this process will remove a huge sense of dread and alleviate stress, improving your quality of life.  This is also a good time to reach out to hospice and palliative care agencies in your area so you can begin taking advantage of their invaluable support services.

Months & Weeks Before Death: Lack of Appetite and Interest 

In the months and weeks before death, many clients lose their interest in a range of things – most notably food and the outside world.

Lack of appetite

This typically starts by consuming smaller and smaller portions, or they may skip some meals altogether. Over time, they may only want things like ice cream, yogurt, smoothies, or simple broths. Finally, in the weeks and days before death, they may not want to eat at all. Lack of appetite is completely normal. Your loved one’s lack of appetite or disinterest in food is one of the hardest things to stand by and support. Our culture equates food with nourishment, comfort, and love. In some cases, preparing, serving, and sharing meals and snacks together may be the only way you’ve “enjoyed life” together since they started dying.  Never force someone to eat if you know that they are in their last months or weeks of life. This is typically the body’s way of saying, “I don’t process food very well anymore. It takes a lot out of me to digest food and much of it isn’t digesting anyway.” Forcing someone to eat who doesn’t want to can lead to severe constipation or intestinal/g.i. blocks that are painful and stressful to treat. Instead, offer food regularly – but don’t take the “no thank you” personally. They are not suffering from eating. Instead, you may cause suffering by forcing or guilting them into eating.

Lack of interest in the outside world

This varies from person to person. Some clients watch football games the day they die, and others stop watching their favorite sports months or weeks before they die. In most cases, we notice a direct correlation between the level of need for inner processing and the level of outside engagement. The more personal and emotional work a loved one is doing on their own (or with the support of a spiritual counselor, therapist, hospice nurse, or loved ones) to work through their life, memories, fears, unresolved situations or emotions, etc. – the less likely they are to participate in the outside world. Remain open to their needs. This is also a good time to let them know the things you want them to know before they are no longer physically available.

Weeks & Days Before Death: More Sleeping & Less Engagement

By the time a client is weeks or days away from dying, odds are the efforts to “fix them” have ceased so they can be as comfortable as possible to do some of the most important work they’ll ever do. The labor of dying is not unlike the labor of being born into the world.  Odds are they will be asleep more than awake, and our job is to keep them comfortable using balanced medications as needed. Your loved ones should have enough to be comfortable but not so much medication that they are knocked out or unable to communicate when/if they want to. Hopefully, they’ve let you know what they want (or don’t want) around them so the space can be arranged to their wishes. 

Days & Hours Before Death: The Body Winds Down

Once death is imminent, we say the client is “actively dying” or “in transition.” During this time, you’ll notice several physical indicators that death is near:

• Blood pressure will become quite low or may not register (there is absolutely no need to take blood pressure at this point, so feel free to let the “vital sign readings” go so you can be present with your loved one).
• The extremities become cooler and may turn grey or blue.
• The heartbeat becomes very weak and irregular – it’s often very fast or fluttery.
• Breathing can be very congested and seem agitated (as many as 30 to 40 breaths per minute), or it may be very slow and seem to stop at times (as slow as six to ten breaths or less every minute).
• Their words may not make sense (people who are dying often begin speaking in metaphors or in symbolic ways, rather than linear ways, in the days or even weeks before death. Resist the urge to “clarify” or “correct”)
• They may be completely nonresponsive, but they can usually still hear you
• Their mouth may be open (they may make gasping sounds, or you may hear a loud, “scary” rattle – called the death rattle – this is normal), so feel free to use sponges to gently moisten the lips, but there is no need to hydrate at this point.

The key here is to keep a calm and peaceful presence. As we mentioned, people who know they are dying go through a “life review,” whether they let you know it or not. Silent companionship is often the preferred method of “communing” with someone who is dying, but it’s also important that loved ones have a chance to speak their last pieces if necessary, as this may also help with the dying person’s “life review” and process. On the flip side, if your loved one was a very private person, make sure to create spaces where they can be alone. For example, “Mom, we’ll slip out for a minute and give you some time alone. We’ll check back in 15 minutes.” Private people often choose to die when no one is present, while extroverts typically wait to die until they’ve seen/connected with certain people or have someone nearby. 

Contact Hospice If You Think Or Have Been Told Your Loved One Is Dying

Your hospice team is there for you 100% of the time, 24/7. If your loved one has taken a sudden turn or you feel concerned about whether or not they’re closer to dying than you thought, feel free to contact Hospice of the Golden Isles at 912.265.4735. We are here to provide comfort and support to our clients and their families and will do our best to stand by and provide insight if and when we know they’re dying.

Fear of pain is the #1 reason people name why they’re afraid of dying. This is where hospice care comes into play. The sooner you contact local hospice agencies and learn about the services, the sooner patients and families have access to an incredible array of support tools, including pain management and comfort care.

Hospice Supports Patients & Families With Pain Management

We can’t specify enough that early is better with bringing hospice support on board. In a perfect world, patients would contact hospice immediately after receiving a terminal diagnosis. However, this is the best time to receive the information offered and to learn that patients who enlist hospice care long before death enjoy the highest quality of life and reduced pain and discomfort.  Finding a hospice agency you trust that comes highly recommended by clients and that you feel comfortable with is essential to this process. Here are some of the ways hospice care supports healthy, balanced pain management and patient support to optimize comfort care for our clients.

Emotional and mental support eases pain

Studies have shown that people who experience high levels of anxiety, worry, and fear also have higher pain levels. When in the presence of these shadow emotions, inflammation increases, immune function decreases, sleep disorders are more common, and the body tenses up.  The full spectrum of hospice support offered to our clients and their families provides stress release, allowing patients to relax and rest more often. That naturally reduces pain levels.

Thoughtful, appropriate, and balanced use of pain medications

Dying is not painful. Nobody feels physical pain because they’re dying. Instead, those who are dying experience pain related to the disease or condition causing their death. The pain associated with your disease, condition, syndrome, or the physical discomfort of being bedridden can almost always be managed with thoughtful and balanced use of pain medications. We recommend watching this short video clip from the world-respected hospice guru, Barbara Karnes R.N., briefly explaining how hospice respects and honors balanced pain and narcotic pain relief. Pain medication should NEVER be used to completely sedate a patient or incapacitate them. The goal is to relieve pain and increase comfort while allowing the mind to be as alert as possible. Death is a natural process, not a medical process, and those who are dying deserve the clarity required to work through their thoughts and emotions so they can go with greater ease, trust, and peace.

Occasional use of anti-anxiety medication

In some cases, the family’s hospice box includes some type of anti-anxiety medication. We try to relieve anxiety without the use of medications whenever possible. If a client was on anti-anxiety or anti-depressants before they went on hospice, we continue that support along with any other hospice-related tools, equipment, or other support aids necessary. However, we may recommend the use of anti-anxiety medications if we notice common signs of heightened agitation with yet-to-be-discovered causes. This may show up in patients picking at bedsheets or their clothing, repeating physical motions, restless body language, moaning, etc. As with any pain medication, we use the smallest dose possible that provides relief. 

Emotional and spiritual support

We mentioned above that stress, anxiety, fear, and other “shadow” emotions have a direct correlation to physical pain. This is just as true for someone who faces the end of life. So often, our clients are working through deeply emotional experiences, traumas, regrets, grief, etc., Without proper support and resolution, those worries and concerns may manifest as misunderstood physical pain. Conversations about end-of-life thoughts, feelings, and emotions are essential to support a loved one where they’re at. However, there is a point where pretending the miracle is on the horizon or that they aren’t actually dying does far more harm than good. Your hospice team facilitates these conversations as desired, and we’re here to provide a wide range of FREE tools and support options, including:

• Information and education about any and all aspects of the dying process and what comes next
• Spiritual support by our non-denominational chaplains
• Emotional and mental support via licensed therapists
• Unlimited access to hospice nurse hotlines, 24/7
• Respite care for primary caregivers and other volunteer services are offered by compassionate community members who are honored to listen to stories, fears, and concerns without judgment or fear.
• Grief support for the client and their family members

Feeling supported provides invaluable comfort to clients, partners, and family members.

Ensuring end-of-life wishes are in order

Everyone knows they should complete advanced medical directives and end-of-life plans, but few do it before they absolutely have to. The desire to get your affairs in order is heightened when facing an end-of-life diagnosis – beyond practical wills, trusts, or funeral plans. However, the demands of medical appointments, increasing care needs, and any fear or anxiety can make it harder to think about and finalize the “practical” aspects of end-of-life care. Your hospice team can sit with you and work through end-of-life planning, doing all we can to provide you with the best quality of life while you’re still alive and to see your wishes carried out once you’ve died.

Say No To Pain And Yes to Comfort

Hospice of the Golden Isles is dedicated to helping our clients say no to pain and yes to comfort in all realms of their life. You deserve to spend your remaining days making the most of your time, surrounded by the people, pets, and things you love most. Contact us to learn more about how palliative and hospice care are uniquely designed to provide sound pain management and comfort care.

There are many reasons people are resistant to hospice care, but reasons typically fall into one of three categories: fear of death/dying, difficulty accepting treatments are not working, or misunderstandings about what hospice is or what we do.

Common Reasons One Resists Hospice And How To Support Them

As hospice care providers, our primary goal is to serve the client. Serving the family and close loved ones is a very close second. However, we can’t do our job without a client’s willingness to explore our services and take advantage of the benefits we offer.  That is unfortunate because in almost all cases, the thoughts, “we need extra help,” “should we think about hospice (or palliative care),” or “I don’t want to live like this anymore,” are all signs that it’s time for hospice care. That said, your helpful brochures, pressing information/research, or pleas may fall on deaf ears if your spouse, partner, or family member is resistant to hospice.  In that case, it’s important to remain compassionate, patient, and curious about WHY they resist. Here are some of the most common reasons people resist hospice and how you may be able to support their shift into considering it.

They equate hospice with dying or giving up

This is one of the biggest reasons individuals or their spouses/partners are resistant to hospice. Hospice does not mean you are giving up or that death is imminent (although the longer you wait, the more likely the latter will become true).  In fact, hospice means you have a terminal or chronic illness/condition with a prognosis of six months or less if the disease runs its course or the client experiences disease complications. That said, quality of life often improves so much that many clients have hospice for many months or even upwards of a year or more after ceasing curative treatments. Flip the script: Acknowledging and preparing for the end-of-life is essential for every adult, especially those with chronic or terminal conditions. Learning all you can about end-of-life care options, including palliative and hospice services, is empowering and helps clients and families make the right decisions to improve their quality of life sooner rather than later.  Hiding your head in the sand means missing out on making the most of the time you have left. If someone fears death or struggles to speak about end-of-life, hospice social workers, counselors, and chaplains are available anytime to work through these conversations with open and empathetic awareness.

They are afraid to admit treatments aren’t working OR treatments are making life worse and not better

There are only so many treatments or medical procedures can do to heal, provide relief, or make things better. In many cases, a chronic condition overcomes a treatment’s ability to heal or help. At that point, the treatment or rigor of the appointments necessary to provide treatment becomes exhausting and debilitating. This wall can be crippling for some patients, but their unwillingness to accept the beginning of the last chapter of their life means they refuse any palliative care or hospice services. Shift the focus: Instead of forcing acceptance about end-of-life issues, talk about taking a much-needed break to regroup, reassess, and make decisions that align with their values and perceptions of quality of life. Hospice can come on board to provide the support necessary during that reprieve and wise counsel – and patients can go back off hospice to resume treatments – or pursue new treatments – whenever they choose.

Resists hospice because they’ve fallen prey to hospice myths

 Hospice myths abound. Some of the most common hospice myths that make people resistant to hospice are:

• We can’t afford it. In fact, hospice is 100% free to all qualifying patients, regardless of age or economic status. It is paid for by Medicare, although private insurance benefits may also cover hospice services. We’ll help you do everything required to bring hospice to your home, hospital/assisted living facility, or our hospice house.
• It’s only for people on Medicare. Similarly, many believe they have to be on Medicare to get hospice care. However, Medicare pays for hospice services for anyone who is a legal U.S. citizen or resident, whether they’re currently on Medicare or not. Once you qualify for hospice service, which occurs during an assessment by a hospice physician and intake team, you qualify for Medicare’s hospice coverage.
• I’m not close enough to dying yet. The longer qualifying clients are on hospice the better. Studies show that while most people wait too late to contact hospice (in the last week or days of life), clients’ quality of life and their life expectancy improves drastically by enlisting hospice care sooner rather than later. Our services provide tremendous relief and peace of mind, which makes the day-to-day more comfortable, stress-free, and meaningful for clients and loved ones.

Other common hospice myths that keep people from contacting hospice when they should are:

• Hospice means giving up any hope of future treatments
• You only call hospice when a person is actively dying
• Choosing hospice means giving up control
• I’ll have to leave my home or hospital/facility to get hospice
• I’m not ready to sign a DNR, and I heard you have to for hospice

Choose to be informed: The best thing you can do to help someone see outside of these common myths or hospice resisting narratives is to get them accurate information. Hospice and palliative care agencies are happy to meet with you at any time to discuss their services and how they can support you. Personalized care is our highest priority. And, as mentioned above, the client is always in control.

Having A Hard Time Opening The Conversation Around Hospice?

If you’re having a hard time opening the conversation around hospice care or end-of-life care, we’re here to help in any way we can. The staff at Hospice of the Golden Isles is passionate about educating the public and making sure they understand the numerous and invaluable benefits of choosing hospice care as soon as you possibly can. Contact us to learn more, at 912-265-4735, or to schedule a consultation.

Frequently Asked Questions

Can a patient refuse hospice care?

Yes, patients have the right to refuse hospice care. In English-speaking countries, patients are given the autonomy to make decisions regarding their healthcare, including whether or not to accept hospice care. However, it is important for patients to discuss their concerns and preferences with their healthcare provider and loved ones to ensure they understand the implications of their decision.

How long to people usually stay in hospice?

The average length of stay in hospice care varies depending on the individual’s condition and needs. In general, patients in English-speaking countries stay in hospice for an average of 17-24 days. However, some individuals may receive care for a few months, while others may require hospice support for only a few days.

Can a hospice refuse to treat a patient?

Yes, hospices have the right to deny admission to individuals for various reasons. While hospice care aims to provide comfort and support to individuals with terminal illnesses, specific criteria must be met for admission. Factors that may lead to the refusal of a patient could include non-eligibility for hospice care, such as not having a life-limiting illness or not meeting the necessary medical requirements. Additionally, if a hospice program does not have the capacity or resources to adequately cater to a patient’s needs, they may choose to decline admission. The decision to refuse a patient is typically made after careful consideration by the hospice’s professional team in order to ensure that the best possible care can be provided to those who meet the necessary criteria.

Why Do People Not Choose Hospice?

People may not choose hospice due to various reasons. Some may be unaware of the benefits it offers, while others might fear losing control of their medical decisions. Additionally, misconceptions about hospice being solely for end-of-life care or a lack of understanding about the available support services may also deter individuals from considering hospice care.