The use of music as a soothing tool is ancient, but the earliest references to music as a medical therapy were cited in the 18th century. Since then, schools, rehabilitation centers, hospitals, nursing homes, assisted living centers, and hospice agencies have used music therapy to help soothe, calm, and restore their patients.According to the American Music Therapy Association (musictherapy.org), music therapy is a research-informed service that uses music interventions to meet the psychosocial and physical needs of hospice patients. If you or your loved one appreciate music or use it as a tool for focus, relaxation, or emotional processing, speak to your hospice agency and see if their volunteers offer music therapy as an option. If you are in the process of choosing a hospice care provider, ask whether music therapy is an offering.
Last month we highlighted all the ways hospice volunteers bring joy, ease, and enhanced quality of remaining life to our hospice clients. However, humans aren’t the only ones who bring warmth and cheer into our client’s households. Our four- (and sometimes three-) legged pet volunteers leave warmer hearts and broad smiles wherever they visit.
Pets play a huge role in the palliative and home care worlds, and we utilize our animal volunteers in a range of settings – from nursing homes and hospitals to people’s homes and our own hospice house.
The Sweet Connection Between Volunteer Pets & Hospice Clients
Animal-assisted therapy (AAT) is the “official” term for the service provided by hospice volunteer pets, and it comes in many forms. Some therapy animals spend their lifetimes by their companion’s side, serving as their eyes or ears. In the hospice realm, AAT comes in the form of companionship and comfort care.
5 Ways Pets In Hospice Care Support Patients
While the majority of our pet volunteers are dogs, we have access to a range of certified AAT animals so no allergy goes un-met.
In addition to dogs, we have access to:
- Horses (usually miniature!)
These pets play an especially important role for our hospice clients.
Relieve fear and anxiety
When people are asked what they fear most about dying, one of the top answers is “Pain.” However, we frequently notice that after the pain is relieved, some patients still experience quite a bit of mental anguish, fear of what it means to die, and anxiety about what will happen to their loved ones after they’re gone.
There are no medications for that type of “existential” fear. All we can do is listen, facilitated inquiry, and do what we can to relieve that generalized anxiety. Pets have a knack for meeting our clients right where they’re at any given moment. The simple act of being near a pet, petting them, talking to them, crying as they stay unconditionally close by, and feeling a connection helps lowers blood pressure and anxiety levels.
Pets in hospice care can soothe the grief of former pets (or human loved ones)
Many of our clients had pets throughout their lifetime and grieve their passing. For some, their last pet was their “last pet” because they felt too worn out or incapable of providing a full-time life for a new pet. Others have had to give their pets to family members or friends when they transferred out of their homes and into assisted living, nursing homes, or hospice houses.
Then there is the general grief experienced by the death of spouses, life partners, peers, or other loved ones. The warm, loving presence of a pet helps to soothe that ache.
The joy of non-clinical contact
Now, as compassionate hospice care providers, we try to keep the clinical out of our client connections as much as we can. Our mission centers around heart-full care – full of kindness, tenderness, and unconditional support – just like our volunteers (both animal and human).
However, something must be said about warm, heart-to-heart contact that has nothing to do with clinical care or diagnosis. Our hospice clients simply enjoy the quiet, caring presence shared between two loving beings.
Extra bursts of “feel good” hormones
Scientific studies show that when humans connect with pets, they experience the same elevation of “feel good” hormones – like serotonin, endorphins, oxytocin, and dopamine. According to Harvard University, these hormones not only feel good, they also benefit you physically and emotionally.
In addition to helping you feel more positive, connected, and filled with “warm fuzzy feelings,” these hormones are also proven to:
- Make people feel more calm and relaxed
- Relieve pain and physical discomfort
- Boost feelings of happiness or pleasure
- Encourage people to be more socially engaged and connected
While some of our hospice clients are surrounded by friends, families, and their own pets at home, others are living alone, far away from family, or are bedbound in a facility-style room. The role of pets in hospice care becomes invaluable, and our clients look so forward to when our pets and their human volunteer companions are scheduled for a date.
Reduce loneliness (and facilitate better communication)
It makes sense that pets in hospice care reduce loneliness for the clients who express interest in having a visit from a hospice dog. Some of our clients are introverts and not very talkative, but they are often comfortable speaking to volunteer pets. Others are very stoic or “hate to be a bother,” and so they won’t always open up about things they worry about or wish they had access to.
Our care team has learned to pay attention to these conversations when they aren’t too personal as we often learn more about what our patient needs, wants, or would appreciate by what they share with their volunteer pet companion.
Benefit From A Hospice Pet Volunteer Through Hospice Of The Golden Isles
Would you or a loved one benefit from visits with a hospice volunteer pet? Do you have a certified therapy animal who would like to volunteer for us?
Get in touch with Hospice of the Golden Isles, and we’ll connect you with the right people – or animals. In our experience, animals overwhelmingly display an innate sense of what our clients need, and we’ve watched miracles occur right before our eyes. We’d love to help you do the same.
We often say that hospice isn’t just for clients; it’s for families too. Hospice volunteers are an essential part of that family support system, offering just about every service, task, chore, or other type of support imaginable.And when we say essential, we mean essential. When hospice was established as a free service to all in 1982, the ensuing Medicare laws required that trained volunteers account for at least five percent of the hospice provider’s total patient care hours. Without our volunteers, we would lose our Medicare compliance and funding. We want to spread the good word about all the amazing ways our hospice volunteers support our hospice agency, clients, and their families.
Hospice Volunteers Do It AllWhether you’re researching to learn more about what volunteers do and how they can support your household or you’re interested in becoming a volunteer, this post honors the reality that we couldn’t do what we do without our volunteers.
The Full Hospice Support TeamWhen you decide to move forward with hospice services, you benefit from a wide range of services and benefits. This includes:
- Home aides
- Social workers
The Volunteers Are Professionally Educated And TrainedHospice volunteers undergo a rigorous training period and experience the same initial training as any new hospice employees (including physicians, nurses, chaplains, etc.). They must also pass a complete background check and have a clean DMV record and a current driver’s license, registration, and insurance. Hospice services are very different from those provided by a hospital or healthcare facility because they encompass the client’s (and family’s) mental, emotional, and spiritual well-being, along with facilitating physical comfort. The volunteers are there to step in and provide services that support the comfort and needs of the hospice client (and family) when it comes to daily living tasks as well as respite care.
What Do Hospice Volunteers Do?There are three main roles hospice volunteers fill in our network.
Administrative & fundraisingSome of our volunteers work for hospice headquarters or in our hospice house, providing administrative tasks. You may also see them supporting any community outreach programs we run or setting/cleaning up booths or presentations at community fairs or other public events we participate in. In addition, they often answer the phones, organize the office, stuff envelopes, prepare mailings, support social media content, and work tirelessly to raise funds – and awareness – for hospice.
Retail & auxiliary fundraisingMost communities have a storefront or retail space that works to raise funds for our agency and to provide information/education about our services. Some volunteers specifically work in our Auxiliary as part of the aforementioned fundraising.
Direct patient care & grief supportFinally, our trained volunteers work in both direct patient care and grief support. The former meets a range of needs that come up when a client is in hospice, and the latter provides free grief support in the form of facilitated grief groups. Hospice agencies typically provide free grief support to anyone in the community (whether they’ve used our hospice agency or not). This support is available in one-on-one sessions with licensed therapists or weekly sessions (typically an eight-week format) facilitated by our volunteers.
Brainstorm ways our hospice volunteers can support youDepending on the time of year and the demand, our hospice agency has dozens to more than 100 trained volunteers working to support the various needs that arise for our agency, our clients, and their households. Here is a list of some of the most common ways our volunteers serve clients, but we’re open to hearing any need you might have and working to find a volunteer who fits the bill. We should note that we get to know our volunteers very well during the intense training period, so we make it a practice to place volunteers in households with shared values, interests, and personality types.
Respite careIn cases where a spouse or family member is providing the bulk of the caregiving, volunteers are there to provide weekly respite care. These shifts are usually around three hours or so (but can be longer if arranged beforehand), allowing primary caregivers a much-needed and deserved break. Our volunteers are there to attend to the hospice client’s needs, providing primary caregivers with time and space to do whatever they want – whether that be taking a nap, meeting a friend for coffee or meal, attending health/self-care appointments, going on a hike, or anything else that helps them restore their energy reserves.
Reasonable household supportOur caregivers can help with all kinds of household support, including things like:
- Gardening/plant care
- Light housekeeping
- Grocery and meal support
- Pet care
- Errand running
CompanionshipMuch of the time, particularly if hospice clients live alone or are in a hospital, a hospice house, assisted living, or memory care center, our volunteers provide weekly companionship. This can include:
- Going with them on walks or wheeling them outside for a breath of fresh air
- Reading out loud
- Listening to music or singing songs together
- Looking through client’s scrapbooks and pictures while listening to their stories
- Bringing them a special treat or favorite food and sharing it together
- Playing cards or board games
- And more!
Learn More About Hospice VolunteersAre you interested in taking advantage of hospice volunteer services? Or, do you feel the call to become a hospice volunteer? Contact Hospice of the Golden Isles. We’ll point you in the right direction, and you’ll understand why hospice volunteers truly do make our world go ‘round!
The term “active dying” is used when someone is in the very last stages of the dying process. This is very different than dying because, in most cases, the physical and mental/emotional states of someone in the active dying stages are identifiable and distinguishable from the slower wind down that happens when they are dying or in decline.
Dying vs Active DyingThe dying process typically happens in one of two ways. Either we die very quickly due to a heart attack, stroke, or traumatic injury. Or, we die slowly over years, months, or weeks. In the latter case, we typically undergo a decline related to a specific disease or illness. Once in a while, some people simply wind down due to old age and the body’s slow shutdown. Sometimes we “live” for a while pursuing curative treatments and therapies or taking medications. However, there is almost always a point where the dying process shifts into the undeniable “active dying” or “transition” phase.
Signs A Loved One Is Actively Dying (Or In Transition)Most literature describes active dying as the last three to four days. However, depending on the internal emotional, mental, and spiritual process a person is working through in the final days of their lives, we’ve had patients who were in a pre-active dying state for a week or more. This means their bodies exhibited signs of active dying we described below, but they live longer than average in that state. Here are some of the most common signs that a loved one has gone from dying to actively dying, in which case they probably only have a few days to a week or so left.
Complete lack of interest in food or waterMost people’s appetites wane months or weeks before they die. This wind down continues more drastically in the week to days leading up to death. By this point, most people do not want any food (or may already be unconscious most of the time – see next), and the only hydration they receive is via sponges dipped in water to comfort their dry mouths and lips.
Sleeping most of the time or completely unresponsiveBy the time someone is in the active dying phase, particularly after the end of a long healthy life or via terminal illness, they begin sleeping more and more. This eventually transitions into an unresponsive or largely unresponsive state. They may open their eyes and look around sometimes, smile, or seem to see things in the distance, but they spend the majority of the time they have left in a retreat state.
Changes in urine output and bowel movementsThe digestive system shuts down before we die, which is one of the reasons we advocate honoring a loved one’s resistance to food. The body doesn’t have the energy or ability to process food and liquids. This eventually leads to incontinence (if it wasn’t present already) or a decline in urine/bowel output. Any urine produced will likely be darker in color. This is completely normal, but your hospice team is there to provide input if you’re concerned.
Confusion or deliriumThe clinical world describes what happens as “confusion” or “delirium.” As long-time hospice care providers, we’re not so sure. We invite you to be 100% supportive of whatever your loved one talks about, sees, or hears during this time – even if it involves people or things you can’t see. Dying people frequently speak in metaphors or symbolic language because they’re not as anchored in the logical, linear world anymore. So, mom might say something like, “Bring me those roller skates, I’m ready to head down the skating hill,” or, “I’m trying to find my tickets for the train, but I can’t find them.” In most cases, reassuring them and letting them know they’ll get the skates or find the tickets when it’s time to go puts them at ease – and you’re getting to witness the sacred and mystical aspects of the dying process. Don’t assume that ‘nonsense’ talk or seeing things you can’t perceive is related to medication. That does a disservice to the dying and means you can miss out on meaningful messages and requests.
Changes in body temperature and blood pressureAs the body’s systems shut down, their temperature may be more erratic – sometimes running a fever of 100 or so, other times registering temperatures lower than the standard 98.6. This is very common. Pay attention to body cues and add or remove soft blankets (or adjust the home temperatures) to help them remain comfortable. It’s also common for their blood pressure to drop significantly. This is also normal.
Mottled, blue, or greyish huesAs you can imagine, circulation slows considerably, and this leads to color changes. Typically, these begin in the extremities (hands and feet). Don’t be alarmed if their skin tone changes to a gray or blueish appearance. It may also become mottled. When this happens, their feet and hands will feel cold to the touch. Unless they are shivering or sweating or able to express discomfort, they are not in pain or uncomfortable. They exist in an altered state and are far less aware of their physical bodies than you are.
Fluid in the lungs and the “death rattle”In the last days and hours, fluid build-up in the lungs and slower (and skipped) breaths lead to what we call the “death rattle.” This is one of the most tell-tale signs someone is actively dying. They are not suffering, although the sounds of the death rattle often cause loved ones to worry. As they get closer to death, their breathing slows considerably, and some people may even pause for a minute or more between breaths, only to resume normal breathing again. Your hospice team is there to support you as needed during this last phase. Your job is simply to be present, quiet, and contemplative. You can pray, and express last words of comfort and love. The less you do, the more present you can be as you witness this last transition.
Let Us Help Support Your Actively Dying Loved One & FamilyAre you in the process of ceasing curative treatments? Have daily tasks become harder to complete on your own as you or a loved one slows down due to disease or age-related changes? Schedule a consultation with Hospice of the Golden Isles to learn more about our services and how we can support you during both the dying vs active dying phases.
Honoring a loved one’s resistance to food when they’re dying is one of the hardest parts of the process. Food and nourishment are associated with love, connection, and memory-making. Unfortunately, it can also feel like participating in their resistance to food means accepting the unacceptable or somehow contributing to their death.Neither of these is true.
Lack Of Appetite & Resistance To Food Is Part Of The Dying ProcessHistorically, humans understood that death from disease or aging included an inevitable retreat from “normal life.” This retreat may start with a loss of vision or hearing, which makes outside events less interesting. It spreads to a shrinking appetite and eventually leads to a complete (if not near complete) disinterest in food altogether. Towards the end, the retreat continues inward until the life we are officially disconnected from the physical form we’ve taken thus far. We appreciate the words of hospice nurse and educator Barbara Karnes, who says: It isn’t that the person doesn’t want to eat. They usually try but state they just “can’t” eat. This is because eating or not eating has nothing to do with the personality choosing to eat or not. It has to do with the body releasing its hold on this physical plane. In other words, lack of appetite and disinterest in food (or the outside world) is a normal part of the dying process, and the letting go of the body that process requires. “Letting go” almost always involves:
- Diminishing appetite (this may begin years or months before a person physically dies).
- Less desire in leaving the home or in “outward” activities.
- Spending more time in quiet reflection or processing memories and events.
- Sleeping more.
- Spending days or hours in an unconscious, non-responsive state.
Forcing Food (Or Guilt Feeding) Causes More Harm Than GoodThis waning appetite typically begins with eating less meat and heavy foods. You might notice that mom eats all of the jello or sips the broth but leaves most of the larger or tougher parts of a meal behind. After a time, she’ll only want broths or liquids. On a good day, she may request or enjoy some bites of ice cream or a shake but rarely finishes it. In addition to being a natural response to dying, this lack of appetite and food-specific desires directly correlates to the body’s digestive system. Physical organs, systems, and processes slow down and then shut down as we die. Eating foods that can’t be digested leads to physical discomfort, including nausea or cramping. It can also lead to constipation or diarrhea, which have their own unpleasant consequences. That’s a horrible way to spend time at the end of life. If constipation results, the remedies and treatments (especially if it leads to impaction) are incredibly uncomfortable (often painful) and compromise a person’s dignity. By honoring a loved one’s resistance to food, we also honor what they can and cannot handle and allow them to die in greater comfort.
Forgoing Food Is A Peaceful Way To GoIn some cases, patients choose to voluntarily stop eating as a way to allow the inevitable to come. This is common for those who have been kept alive via medical treatment or plans and curative medicines that no longer provide treatment, a cure, or high quality of life. This is also an option for people who no longer want a feeding tube or accept they’re dying and no longer want to prolong dying by forcing themselves to eat and drink when they either can’t or don’t feel like it. If the person is ready to cease treatment and isn’t feeling hungry anyway, voluntarily stopping eating and drinking (VSED) is a natural choice. As we cited above, when the body no longer wants food, or can’t process food, it’s not hard to stop eating or drinking. In fact, patients who cease eating with the support of their families have some of the most meaningful and peaceful last weeks and days because the energy in their space turns from “treatment” and “doing-based” action to the more spacious energy of connection, “being,” and reverence for the precious time remaining. The good news about VSED is that people can change their minds at any time and begin drinking fluids and eating again whenever they wish. In that case, we hope their return to eating and drinking is 100% their choice and not out of obligation to family members or loved ones pressuring them otherwise.
Tips For Supporting A Dying Loved One’s Refusal To EatAgain, it’s not always easy to stand by when a dying loved one no longer wants food or water. However, it’s our experience that the most peaceful and meaningful deaths are those where the one who is dying is respected, and those who surround them dedicate themselves to supporting whatever needs arise. Here are tips on how to support your dying loved one when they resist food or refuses to eat.
Enlist the support of your hospice teamYour hospice team is there to support you in every way. Lean on us when you need to. We’re here to remind you that what is happening is completely normal, to provide resources around whatever arises, and offer comfort care accommodations as needed.
When there is resistance to food offer it but do not pressureIt’s always fine to offer food and drinks. Sometimes a person may go several meals or several days without food and then say yes to some sips of a favorite soup or suck on a popsicle. So, we recommend offering sips, light foods or snacks, and small treats as you would normally, but graciously respond to refusals to prevent your loved one from feeling pressured or guilted into consuming food when they don’t want to. Also, the standard three meals a day are overwhelming in most cases. Instead, shift to smaller and more frequent food offerings.
Review (or create) an end-of-life planThe more you and a loved one include in your end-of-life plan, the easier it is for others to honor those wishes. If you don’t have an end-of-life plan in place, consider creating one. Feel free to use our Questions to Ask to Prepare Your End-of-Life Plan to start the process. Then, share that plan with your hospice team and closest loved ones so everyone understands your wishes. If you already notice a declining appetite, consider adding something specific about not wanting to feel pressure around eating and drinking.
Use damp oral swabs to keep the mouth moistOnce a person is no longer drinking or drinking very little, their mouth becomes understandably dry. You can use dampened oral swabs to moisten the mouth as desired or needed to combat this uncomfortable side effect. For this purpose, we recommend getting swabs without mouthwash or flavoring. If that’s all you can find, dilute them first and use pressure against a dry surface to remove excess water before swabbing the mouth. Your hospice nurse can provide swabs for you or have them delivered. These swabs are also available online and in drug stores. Keep a lip salve handy and apply a light coating on the lips after the mouth is swabbed to prevent chapping. Here is a video explaining how to do this if you don’t have a hospice care team on board.
Connect With Us For End-Of-Life SupportAre you facing an end-of-life diagnosis? Has an aging loved one seemed to retreat from normal activities or eating regular meals? Connect with Hospice of the Golden Isles. After hearing about your experience, we can make recommendations on whether or not hospice support can help. Hospice provides 24/7 access to information, advice, and support to ensure you’re never left with unanswered questions – including what to do when a loved one stops eating.
5 Key Things To Understand About DyingAs hospice care providers, we appreciate the dedicated work of Babara Karnes R.N., and we’ve recognized her work in previous posts. Karnes has a beautiful, short video and a body of easy-to-access DVDs, booklets, and other literature you can access from your local hospice agency or online. All are affordable and are immensely reassuring resources for families of loved ones who are at the end of their physical lives. Here are 5 key things to understand about dying, otherwise called The New Rules of End of Life Care.
Dying is not a medical eventEvery living thing dies, including humans – and ourselves. This tells us that death isn’t a medical event; it’s a natural part of the life cycle. Some of the events or causes leading up to death may have been medical, for example, health conditions or diseases that may or may not have a cure or treatment options that suspend physical life with the disease. However, once the scales have tipped from living with the disease to dying from the disease, it’s time to chart a new course of action (or non-action) in the form of a conscientious end-of-life plan. The same holds for those who are dying due to old age; recognizing the signs that someone in their mid-80s or older is dying allows us to shift into the service supporting them as their body begins to let go of life. If families cannot recognize that death is not a medical event but, as Karnes reminds us, “a communal event” they continue pursuing medical interventions, treatments, and hopeless curative attempts that often do more harm than good. Treating death as “clinical” or “the worst thing” rather than Precious Time means the potential for far more physical, mental, and emotional pain, discomfort, anxiety, and anguish for your loved one and everyone else. The antidote to that dismal reality is recognizing that an individual is dying, and then honoring this sacred rite of passage for them and the community.
Lack of appetite is okay and 100% natural during end of life care“Food is what holds us in our body. Food is the anchor that…gives us grounding, and if the body’s preparing to die – it doesn’t want the food or the grounding. It’s trying to let go.” If someone dies from old age, their appetite begins to wane years and months before they actually die. Likewise, when people die from a more specific illness, disease, or syndrome, their appetite may wane or disappear more abruptly. Either way, in addition to helping the body let go, a lack of appetite or interest in foods also indicates the body can no longer process them. If that’s the case, insistence on eating or wheedling and getting someone with no appetite to eat can lead to unnecessary medical interventions or painful treatments due to intestinal blockages or severe constipation/diarrhea. It is not easy for loved ones to honor a dying person’s wish to not eat because food is such a source of comfort, a way to show love, and a way to pull the community together. However, one of the most loving things you can do is honor that. Offer things they love, or simple broths, liquids, etc., but never force or coerce. Take the energy and intentions around “forced eating” and put it into the more meaningful practice of preparing for their death. Honoring their wishes in the appetite arena increases their ability to die more comfortably.
Death is not painfulThat is a natural segue to the next rule for loving end of life care: death is not painful. “The person is so removed from their physical body that they don’t experience it [pain] the same way that we who have a firm grip on this planet feel it.” Some things may cause pain, typically related to the pain associated with whatever condition they may be dying from, or from being bedbound, but these are fixable using reasonable comfort management strategies. End of life pain management should correlate with pain levels related to the disease and its progression – not that a person is dying. Beware of the tendency to administer morphine for pain without expert recommendations. Most clients are more interested in being slightly uncomfortable or willing to experience tolerable amounts of pain/discomfort than being drugged up and unable to think, process, or communicate clearly with those present. Instead, treat disease-oriented pain until they die, but never more than they need. Let your hospice care team be your guide in pain management and comfort care, ensuring you’re allowing room for the loved one to die with as much clarity as possible.
Withdrawal is a natural part of the dying processWithdrawal, indicated by more sleep, quietness, nonresponsiveness, etc., is all part of the dying process. As we die, our bodies slow and shut down so that our minds and souls can let go, move inward, and shift out of our physical bodies. Just as you don’t wake a sleeping baby, you do not disturb a sleeping or withdrawn dying person unless absolutely necessary. Unless the dying person indicates otherwise, it’s fine to hold their hand, to lie in bed with them, or to let their dog/cat curl comfortably at their side. The closer they come to their last moments, the more withdrawn they typically become. Your hospice team is there to remind you of what is normal, so you can be more attentive to what is happening and less in denial or the dissociation of trying to fix and control everything.
Your presence is the greatest gift you can give a dying personBeing present is one of the greatest gifts you can give to someone who is dying. The witnessing, the holding, the touch, the love – that communal companionship and presence are more important than anything else. Once someone is actively dying, caregiving should shift from “trying, trying, trying” to an attentive presence. In that way, acknowledging, surrendering to, and respecting that someone is dying can energetically restore caregivers so they can be present – rather than working as hard – during these last precious weeks, days, and hours. Words are less meaningful at this point as dying people may hear them, but words are less meaningful because they are disengaging from the physical realm and retreating inward. If communicating complicated, painful, or challenging messages, keep them quiet, simple, and short. Less is more, yet less can mean everything to you and your loved one. Remember, this moment only comes once, and you can never revisit it. A reverence for the deathbed and its natural progression is something you’ll never regret. Forced business, avoidance, or forcing your agenda on the dying can haunt you for the rest of your life.
We Support Your Family With End Of Life Care“When we’re at the bedside of a person who is dying, it is all about the community – about the togetherness – not about the medical stuff going on.” We’ll end as we began. Dying is not a medical event; it is a community and cultural event – as much as an individual process – that honors the age-old rhythm of life, that begets death, that begets more life, and so on. Hospice of the Golden Isles is honored to be there and support your family as you participate in the natural waning of your loved one’s life. Contact us to learn more about our services and how we can provide comfort, assistance, and compassionate expertise for you and your family.
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 PlanPatients 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 regroupPhysicians 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?”
Connect with a patient advocateHealthcare 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 optionsSometimes 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 truthsReclaiming 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 hadSometimes 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 TreatmentsScheduling 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 DeathWhile 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 faceMost 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 dieThe 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 laterIf 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 fullestThis 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:
- 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
Honoring the natural cycles and rhythms of all lifeNothing 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 DyingWould 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 LifeDeciding 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 leftThe 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?)
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
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 DiseaseAre 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.