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Are Your Emotions Hindering A Loved One’s Dying Process?

are your emotions hindering a loved ones dying process

Being fully present and honoring the dying person is one of the most invaluable gifts we can give to those we love. However, all too often, our own emotions get in the way, preventing loved ones from having the unconditional support they need to engage in their own dying and death process fully.

Your Emotions Can Negatively Impact A Loved One’s Dying Process

Your hospice team is there to educate, instruct, and guide you – and to bring a wellspring of support – to your loved one’s bedside. This is why enlisting hospice sooner rather than later is always better. When a spouse or well-meaning family members aren’t able to step back and give their dying loved one the space they need (or when they overcrowd the bedside with their own needs), it negatively impacts the person’s dying process.

Ways Your Denial, Anger, Sadness, Or Grief Hurts More Than Helps

The months and weeks leading up to a person’s death are overflowing with intense emotions and this is absolutely normal. Some of the most common emotions sparked by dying and grief are denial, anger, bargaining, sadness, and grief.  When you unconsciously express powerful emotions when a loved one is dying without respect for their experience or needs, you may contribute to things that hinder them from being able to:
  • Accept that they’re dying.
  • Talk about their death or process their emotions around dying.
  • Express their wishes or create their end-of-life plans.
  • Have important conversations around things they need to forgive or take accountability for.
  • Be present at their own death (because they’re so busy taking care of your emotional needs).
  • Die in comfort because they’re constantly interrupted, forced to eat (more on that later), or made to feel as if they’re failing rather than surrendering to a normal part of the life cycle.
Let’s examine each of these so you can put yourself in their shoes and understand how important it is to manage your own emotions (again – lean on hospice support!) so they are a balanced and healthy part of the process – rather than a hindrance.

They don’t have a chance to accept they’re dying

Imagine knowing something about yourself, or at least having a strong suspicion, but then having it denied by everyone around you. It’s a very lonely place, and it’s a place that many dying people find themselves in when their partners, children, loved ones – and even clinicians – won’t be honest about the fact they’re dying. In his book Die Wise: A Manifesto for Sanity & Soul, famous culture activist, worker, and author Stephen Jenkinson writes, “We know without wanting to know it that knowing we could be dying somehow begins our dying.”  The opposite is also true; not being allowed to know it or being blocked from the multifaceted acknowledgment that we’re now, officially, commencing the death journey keeps us from the meaningful unwinding process that inevitably begins when we’re able to fully acknowledge and surrender to our death. Expressing emotions honestly, but also supporting loved ones as they accept that this is their physical end, is one of the most profound things we can do. It also begins our own “learning” of what it means to die.

They can’t talk about their death or process the resulting emotions

Similarly, someone who isn’t allowed to spend time accepting that this diagnosis, ruthless pursuit of ineffective treatments, or combination of symptoms signifies the official waning of their physical life isn’t able to talk about their death. If you can’t talk about your death, you are burdened with walking a very inward, solo journey OR not having the chance to process what it is you need to process, discuss, or work out for more peace of mind and spirit when you die.

They can’t create meaningful end-of-life plans

Some of the most common things loved ones say that shut down a person’s death process are:
  • Don’t give up yet- there’s still hope.
  • Let’s not talk about that now; we can talk about that later.
  • You’re not dying yet, so just relax and don’t worry about that.
  • You’re not dying. You still have plenty of good years left.
However, if someone wants to talk about these things, they deserve to have unconditionally supportive spaces and outlets for that. Without the ability to share their experience, wishes, wants, and needs around dying, they cannot create meaningful end-of-life plans OR to change plans they put in place years ago but want to change.

They can’t seek or offer forgiveness or make amends

Dying is a clarifying process. There may be physical suffering due to whatever disease or condition brought you there, but it brings things into clear focus. To die with a clear heart, spirit, and mind, we need time and space to perform a life review. This happens when we’re dying and helps to create a more peaceful, active dying experience. During this process, people who are dying like to have important conversations with loved ones, and their loved ones deserve the chance to have meaningful conversations with them. Depending on the situation, the dying person may want support from a therapist or spiritual counselor, especially if amends need to be made in either direction with someone who is dead or no longer in the picture. We see over and over again how clients who have the space and time to do this deep work in the years or months/weeks leading up to their death die more peacefully and with greater physical ease.

Spend more time taking care of others’ needs than their own

As hospice professionals, we learn to keep our emotions in check. Do we feel sad, tender, and moved in our patients’ homes or places of residence? Absolutely. Do we get choked up or teary-eyed depending on the situation? Yes. But we don’t weep so uncontrollably that our clients and their families must comfort us. We are there to support y’all! Healthy, balanced emotional expression is always welcome from a dying person’s loved ones. However, if those emotions overshadow the dying person’s experience or hinder their need to express their feelings, it’s a problem. Pay attention to your feelings and how they impact the dying person. If it seems like your feelings are overshadowing theirs, or they’re no longer able to share their own experience because they’re afraid of upsetting you, it’s time to seek help from the hospice team to get the support you need.

They die with more discomfort and distress

Finally and most tragically, if your family’s emotions and needs eclipse your loved one’s dying process, they die with more discomfort and distress. That’s the exact opposite of what you want for them, right? Here are examples of how that happens beyond what we’ve shared above.
  • They don’t have hospice care in enough time to keep their pain or discomfort in check (are you the one resisting hospice support, or are they?)
  • They don’t have access to palliative care in their last six months (or more) of life, which adds considerable quality of life for most clients.
  • People insist on feeding them or coercing them to eat when they no longer have an appetite (this causes considerable physical distress if their body can no longer digest food).
  • They have guilt about the toll their increasing care needs take on their partner/family because they don’t have access to respite care and other services provided by the hospice team and volunteers.

HGI Supports Families Create Meainginful & More Comfortable Deaths

Are you struggling to accept that your loved one is dying? Do you recognize that your emotions are blocking their access to high-quality care but don’t know what to do? We understand because Hospice of the Golden Isles supports families like yours every single day.  Contact us to schedule a consultation and learn more about our services. Rest in the awareness that we have the resources, information, and tools you need to walk this path with your loved one in a way that honors their life while allowing them to do the work they need to do to die with peace of mind. 

Understanding The Emotional Stages Of Dying

understanding the emotional stages of dying

Our contemporary awareness and honoring of the emotional stages of dying and grief are rooted in the work of Elisabeth Kübler-Ross, a Swiss-American psychiatrist. Made famous by her pioneering work in near-death studies, Kübler-Ross conceptualized five common emotional stages experienced by her clients facing terminal illness: denial, anger, bargaining, depression, and acceptance (DABDA).

Support Dying Loved Ones: Understand More About Their Emotional Journey

Her influential work has been highly misinterpreted, leading to undeserved criticism. Those of us who work in hospice understand how instrumental this awareness is when supporting those who are dying, their loved ones, and their caregivers.  Understanding what people go through when facing a terminal illness, imminent death, or when grieving the loss of someone we love provides insight into their shifts in moods or potential reactive emotions and behaviors.  Building on the work of Kübler-Ross, other mental health professionals (like Alan Wolfelt, John Bowlby, Colin Murray Parkes, David Kessler, and others have built on her work, identifying additional ways of expressing the emotional journey inherent in the dying process.

The Famous Five Emotional Stages Of Dying And Grief

One of the biggest misconceptions people have about Kübler-Ross’s “Five Stages” is that they’re compartmentalized or that an individual goes through one of the stages, finishes with it, and then moves on to the next. This is not so.  Instead, these are more like five emotional facets of dying and grief. Those experiencing them tend to move through them fluidly, rather than in a particular order, and can move back and forth – there may never be a “finishing” of them at all.  Your hospice team is here to help you all remember and understand these stages so we can work together, providing whatever support the client needs.

Denial

While most of us logically understand we’re going to die, another part of us thinks, “Everyone will die but me.” As a result, denying that we’re dying happens to most people who know they’re dying – whether they’re involved in a traumatic accident, facing a fresh terminal diagnosis, or experiencing the final stages of a chronic health condition. Denial may look like:
  • Questioning a doctor’s expertise.
  • Blaming faulty testing or false diagnostic results.
  • Refusing to talk about a diagnosis, prognosis, or anything related to dying.
They may also experience:
  • Depression
  • Anger
  • Shock
  • Confusion
  • Loneliness

Supporting the denial stage

First, it’s not always easy to know whether a person is in denial or if they don’t completely understand the diagnosis/prognosis. Once you’re confident they’ve received the information clearly and understand their new reality, the best thing you can do is give the person space to process their emotions.

Anger

People frequently feel angry about dying, especially if they are younger, have unfinished business, or their diagnosis comes as a complete shock. When people are angry about dying, they’re likely to go into “why me?” mode or start to blame others for their situation. Clients may also exhibit signs of:
  • Frustration
  • Rage
  • Anxiety 
  • Fear (anger is almost always rooted in fear)

Supporting the anger stage

This can be very hard on caregivers as humans tend to be the most unkind, reactive, and downright mean to the ones they’re closest to. Let your hospice social worker know if anger is showing up in overwhelming or dangerous ways. If a client is stuck in anger or anger is manifesting via rage, hospice social workers and therapists are here to help.

Bargaining

The Bargaining stage frequently overlaps with anger. The “why me?” question leads to trying to make things different. If only X would happen, then Y would/won’t. Or “I promise I’ll volunteer more in my community if this treatment can just let me live long enough to do so.”  Someone in deep grief may bargain in ways like, “If I can just go back in time to redo that conversation/action…then this would be so much easier to bear.” Or, “God, if you spare my husband, I promise I’ll never snap at him again.”  During the bargaining stage, loved ones may also feel:
  • Anger/rage.
  • Frustration.
  • Regret.
  • Sadness/depression.

Supporting the bargaining stage

You’ll notice a theme here: the best way to support any strong emotional stage is to be a silent, attentive listener. Fixing or providing advice, placating – they don’t work. Your job is to be there as a quiet supporter and companion. It’s best to leave therapeutic-type work to the pros. That said, you may identify an underlying emotion under the bargain. For example, if a dying loved one bargains, “If God would just let me live, I would be so much more patient with the ones I love.”  You now know they feel regret and sadness about their impatience. You can witness that and see if they have anything more to offer. “I hear that you’re sad and regretful that you were impatient with loved ones. That must feel hard right now.” 

 Depression (profound sadness)

It’s a rare person that doesn’t have some amount of sadness around their death. Even people who are ready to die due to their pain, treatment fatigue, or a feeling their life is complete still feel sad about leaving loved ones behind or never seeing another beautiful sunset in this physical form.  However, others may sink into a deep depression. This phase is grief at its most impactful. It can take people to very lonely, dark places that are almost a rite of passage, as it is only by moving through these strong emotions that they open up to experiencing joy, gratitude, and surrender. Depression may look like:
  • Not getting out of bed. 
  • Retreating from people and activities they love.
  • Sleeping all the time.
  • Not eating (or overeating).
  • Self-pity
IMPORTANT NOTE: Most of these signs of depression in the dying also occur when our physical death is imminent. Read How Do We Know When a Loved One is Dying for more detailed information about the physical processes that wind down and what that looks like as a caregiver.

Supporting the depression stage

Someone who experienced depression before their diagnosis or prognosis is more prone to depression afterward. This can be one of the longest or most frequent of the emotional stages of dying. People need time to process. However, if you feel the depression compromises their quality of life for an extended period, speak to your hospice team or a mental health professional.

Acceptance

The acceptance phase is a gift of sorts, but that doesn’t mean painful visits from anger, sadness, or denial don’t also accompany it. Someone in the acceptance phase begins to look ahead to their death and is best able to plan how they want to spend their remaining days.  Moments of acceptance open possibilities for the one who is dying and their loved ones. This is the window for creating thoughtful end-of-life (EOL) plans that align with what the person truly wants. Making EOL plans from anger, grief, or denial may mean hearing lots of, “I don’t care. Whatever you want.” or “Don’t do anything. Just bury me/cremate me and move on,” or “It doesn’t matter anyway.”

Supporting the acceptance stage

Perhaps the hardest part about supporting a dying person’s acceptance phase is that you may not be there yourself. If you’re experiencing anger, depression, or denial, they have to spend this phase feeling more alone, and without the support, they need to make the plans they want to make. Being able to separate yourself from your feelings and honor their acceptance and using other family, friends, or community professionals to process your feelings honors your loved one’s experience.

HGI Supports Clients & Families Through The Emotional Stages Of Dying 

The emotional stages of dying are intense, but you don’t have to experience them alone. Reach out to Hospice of the Golden Isles and learn more about how our palliative care and hospice teams can accompany you through them, providing unlimited information, education, and emotional support.
the role of palliative care in hospice

The Role Of Palliative Care In Hospice

The word palliative means “relieving symptoms without treating the condition.” This is precisely the role of palliative care in hospice. 

Palliative Care In Hospice Differs From Palliative Care

This can become confusing because there is an entire specialty, called palliative care, that helps to provide comfort care while a patient simultaneously pursues curative treatment for their disease.  While Palliative Care and Hospice Care share a portion of their concentric circles, they are not quite the same thing. Palliative care as a specialty provides comfort care while patients continue pursuing curative treatments. It may be covered by insurance, but it may not be – but it does provide a whole-person approach to comfort and healing that is not always available from treatment specialists.  Hospice is free to all qualifying patients, regardless of income, as it is paid for through Medicare. However, it is designed to bring whole-person comfort once qualifying patients decide to forgo or cease treatments. If you are struggling to maintain quality of life while pursuing treatments, we recommend reading our post, When to Stop Disease Treatment, and discussing it with your healthcare providers, spouse/partner, and loved ones.

Hospice Is Dedicated To Palliative Care At The End Of Life

If you’ve decided to stop pursuing curative treatments (medications and therapies to manage existing health conditions and symptoms are absolutely fine), hospice can provide invaluable peace of mind for patients and families. Rather than go it alone, with erratic support and information gaps between medical appointments, hospice care brings all of that to you – at your home, hospital, post-acute facility, or wherever else you live.  From hospice physicians and nurses to medical aides, social workers, chaplains, volunteers, and more – you and your loved ones/caregivers have access to all of the support and information you need. And, because hospice runs 24/7 nurse hotlines, you can get answers to immediate questions about how to best care for or handle a situation at any time of the day or night.

Hospice Comfort Care Looks Like…

The role of palliative care in hospice is multi-faceted, and our services are as varied as the people we serve. Ultimately, our goal is to help you get the very most out of each day you have left – and live those days as peacefully as possible.  We can’t emphasize enough: the sooner you enlist the help of a hospice agency, the better as studies show that people who take advantage of hospice live longer – and with greater satisfaction and ease than those who wait too long or never use hospice at all. Here are some examples of what comfort looks like for our clients.

Healthcare and comfort wherever you live

For many clients, the rigorous schedule associated with a terminal or chronic illness (physician appointments, seeing specialists, lab work, filling/picking up prescriptions…) becomes almost as exhausting and depleting as the condition they have.  Once you’ve enrolled in a hospice agency’s service, we bring everything to you. From visits to physicians, nurses, aides, and the rest of the hospice team (chaplains, social workers, therapists, volunteers, etc.), the world comes to you. Where you’re at. So you can make the most of each day and conserve your time and energy.

Receiving  “durable medical equipment” where you need it

When you’re in hospice, any of the durable equipment you need is ordered by your hospice nurse and delivered right to your home – typically within a single business day or less. Durable medical equipment is a medical/industrial term used to describe all of the structural, medical, and furniture-like items that increase ease and comfort as physical abilities wane – or your body needs different positions/setups to navigate daily tasks.  Examples include:
  • Beds that raise/lower/change position and alternate pressure to prevent bedsores.
  • Trays and tables that adjust to the heights or positions required for you and caregivers to access what you need.
  • Breathing support (oxygen – home and portable, nebulizer (breathing treatment support), cushions/supports, etc.)
  • Bedside or bathroom commodes.
  • Wheelchair/walker/canes
  • Orthotics 
  • And so on.
Whatever equipment you need to be taken care of can be requested and is always approved if we can make it happen.

Accurate information and education

Some of the biggest discomforts around illness or end-of-life issues include the mystery of what’s what at any given moment. And, despite what it might seem like, Google doesn’t have all the answers – delivered by a compassionate human with hospice expertise. Once you’re in hospice, you have access to weekly visits from the care team (more as needed, depending on your situation) and a 24-hour hospice hotline. This resource is invaluable in those middle-of-the-night moments when you aren’t sure if what you’re experiencing is normal. Or, perhaps a brand new symptom seems to appear in a single day; whatever the case, hospice nurses are there to answer your questions, provide answers and insights – or instructions on what to try or do next. This level of access provides significant peace of mind because you know you are never alone!

Emotional and spiritual comfort

Living with a terminal condition is not for the faint of heart. It takes its toll emotionally and spiritually – as well as physically. However, the clinical medical world doesn’t yet offer much in the way of caring for the emotional and spiritual being. Our hospice social workers, chaplains, and grief support teams can meet with you regularly to listen, provide resources we feel might be helpful, companion you through the shadow times, and facilitate your process – whatever that might be.  We are not here to tell you or teach you anything. Quite the opposite. We respect every client’s questions, concerns, doubts, and crises and share the space with them until they find their way back to a more ease-filled place. Clients who live alone frequently seek emotional or spiritual comfort by utilizing our hospice volunteers. These volunteers visit them to read, converse, share stories, listen to music, take walks outside, and otherwise find a bit of joy together that day. 

Clarity around end-of-life issues and planning

We mentioned that “the mystery of what’s what in any given moment” is often the scariest part. This is certainly true for anyone facing the end of their life – whether in a month, six months, or several years down the road.  The reality is that most of us die a slow death due to a chronic illness/condition or the result of “old age.” Regardless, the mysteries around all of it can be the scariest part. As your hospice team, we provide comfort by shining a light into that space as much as we can, including:
  • Learning more about what happens when the body is dying.
  • Real-time information about present-moment experiences and what they mean (for example, a waning/lack of appetite is normal, and it’s wise to respect that to keep the body free from food at those times as it’s not processing it well. 
  • Knowing how to recognize active dying (when a person has a week or less, in most cases ) 
  • Helping you create personalized end-of-life plans if you haven’t done that already so you can rest assured things will happen according to your wishes.

We’re here to support your family

First of all, we want to be clear that by “family,” we mean anyone you care about who is part of your care team during this time. Sometimes, it’s truly a spouse or partner, children, siblings, etc. Other times, it’s a best friend, a former spouse/partner, or a dear neighbor. Regardless, the hospice team is here to support the people you care about most! Perhaps it is no surprise that many of our clients are far more concerned about their spouses/partners and loved ones than they are about themselves. Knowing that their caregiving team has hospice support is a tremendous comfort and alleviates the depletion associated with worrying.

Hospice Of The Golden Isles Provides Palliative Support Via Hospice Care

Would you like to learn more about how hospice provides whole-person comfort to our clients and families? Schedule a consultation with Hospice of the Golden Isles. It’s never too early to learn more about what’s available to you.  These consultations are free, and you have no obligation to use our service. However, we experience the ease our services bring and hope that you and your family have the opportunity to use them when you feel it’s right for you.

The Ethics Of Hospice Care

the ethics of hospice care

Hospice is an incredible service that supports clients (and their families) when they’re nearing the end of their life. It is funded by Medicare to make it completely free and available to anyone who qualifies. 

It is one of the most ethical, tender, and morale-centered clinical services in existence – and the Hospice Foundation of America, the National Association for Homecare & Hospice, and the millions of people who work for hospice strive to uphold high ethical standards.

The Ethics Of Hospice Care Are Anchored Around Core Themes

The ethical standards guiding hospice care, which are specifically designed to support clients and their loved ones, are anchored around eight core themes.

Patient rights & responsibilities

A copy of our commitment to patient rights and responsibilities is visible in all hospice agencies and available to clients upon request. Ultimately, hospice care is available to anyone who qualifies regardless of age, race, culture, gender, religion/spiritual beliefs, etc. And all of our services are completely free.  Ultimately, patients are in charge of their care. We are here to serve them and honor their wishes while providing complete access to the full spectrum of hospice care support. Your rights and our responsibility to patients include the right to:
  • Appropriate and professional care relating to physician orders.
  • Choose their care providers (through hospice, Medicare/MediCal, or private insurance providers).
  • Receive the information necessary to give informed consent before starting any procedure or treatment.
  • Refuse treatment within the confines of the law and be informed of the consequences of his or her action.
  • Complete privacy and confidentiality (hospice is governed by HIPAA).
  • Receive a timely response to his or her request for service from the agency.
To read a complete list of patient rights and responsibilities, request a copy from prospective hospice providers during your initial consultations.

Relationships to other provider agencies

Hospice is not there to “take over.” Yes, clients must stop “curative treatments” to receive hospice but have complete access to prescriptions or therapies to manage existing conditions and relieve any side effects. So, hospice teams work diligently to collaborate with your current health team, specialists, or provider agencies needed to optimize your care.

Responsibility to governing bodies

Hospice is governed by Medicare and related entities that oversee and enforce our compliance with their standard medical, legal, and ethical guidelines. 

Fiscal responsibilities

While hospice services are free to all clients, they are funded by Medicare and paid for by taxpayers. Therefore, we’re obligated to provide the highest quality services at the most reasonable expenses. It’s essential that those services are offered equitably and billed consistently with the amount and type of service provided.  Other fiscal responsibilities we vow to uphold include:
  • The cost per visit includes only legitimate expenses
  • Never engaging in kickbacks or payoffs.
  • The salaries and benefits of the provider and administrative staff shall be consistent with the size of the agency, responsibility, and geographic location.

Our commitment to personnel

We bring the same level of attention to the ethics we guarantee to patients to our incredible personnel. Our agency knows that a positive, supportive, compassionate, and empowering company culture is essential to attracting and retaining top-notch personnel. Some of these ethical commitments we make to employees, staff, and personnel include:
  • Being an equal opportunity employer and complying with all applicable laws, rules, and regulations.
  • Maintaining written personnel policies available to all employees and uniformly applied across the spectrum of our employees.
  • Providing continuing education and in-service training for all employees to update the knowledge and skills needed to give competent patient care.
  • Hiring adequate staffing to meet the needs of the patients to whom they render care.
  • Maintaining a pay scale consistent with the geographical location, as well as the employees’ education, training, experience, and length of service with our agency.

Additional Ehtics Exemplified By Hospice Care

All of those bullet points and attention to equitable employment, patient care, and treatment are critical. However, we want to also amplify the ethical way in which we provide care to our clients and families.

Hospice Takes A Whole-Person Approach

The Western medical/clinical model is slowly coming around to treating patients as whole people. However, much of what we witness is a very “one part” approach to medical care and treatment of patients before they come to our service.  Once you opt to use palliative or hospice care, we are here to support more than your physical quality of life. Our team also assesses and supports your mental and emotional well-being. This is done via:
  • Continuous monitoring by our heart-full social workers.
  • Visits from spiritual advisors.
  • Grief support for you and your family.
  • Access to volunteer services that provide everything from companionship and respite care to grocery deliveries and plant watering.
  • Visits and services from any branch of your hospice team happen where you’re at, whether that be at home, in our hospice house, hospitals, nursing homes, assisted living communities, etc.
  • Deliveries of all medications, durable medical equipment, and other supplies related to your clinical, hospice, or comfort care.
We are also here to help you make your end-of-life plans so you feel seen, heard, and witnessed as you work through the decisions that ensure you have a say in as much of your experience as possible. Also, you benefit from the emotional support you deserve to buoy you through some of the harder acknowledgments, decisions, and choices.

Experience Ethical Client-Centered Care From Hospice of the Golden Isles

Are you interested in learning more about palliative and hospice care services? Is your quality of life – or the quality of life for your caregivers diminished to a point that something needs to shift? Reach out to us at Hospice of the Golden Isles to schedule an assessment. There is no obligation, but you deserve the information you need to make the very best – and most ethical – choices for yourself and your loved ones.

Hospice Care And Dementia

hospice care and dementia

Hospice care was initially designed for patients with cancer or other terminal illnesses. Unlike dementia, where patients can wind up in a decline that lasts for years, patients with cancer or terminal illnesses follow relatively predictable declines – especially after stopping disease treatment or when treatments no longer work. 

As a result, hospice is built on a “six-month prognosis” model that doesn’t quite fit with most mid-stage or even many late-stage dementia cases. This means we can wind up with complications that are less common for a hospice patient with a 

Understanding Hospice Care And Dementia

The first step to understanding hospice care for patients is understanding hospice eligibility criteria. These criteria are set by Medicare and include an attending physician (if they have one), and the hospice physician certifies them as terminally ill, with a medical prognosis of 6 months or less to live if the illness runs its normal course. This doesn’t mean you automatically lose hospice benefits if you don’t die in six months. In that case, the hospice physician does a reevaluation. You can renew hospice services if they feel six months is still a reasonable prognosis. We’ve had some patients who’ve been on hospice for one or more years because their diagnosis (advanced COPD, heart or lung disease, etc.) can take sudden turns or result in an acute death.  However, we’ve also had patients who had to switch from hospice to palliative care because they improved so much as a result of their hospice care that their prognosis lengthened. Unfortunately, there is a large gap in the healthcare system when it comes to supporting patients with dementia – along with their partners, families, and caregivers. As a result, hospice agencies are doing all they can to provide families with the information and support they need.

Dementia & Hospice Care: When To Call For Help

When spouse and family caregivers are involved, the slow but steady dementia decline can become the proverbial frog in a heating pot of water. In the beginning, the combination of family caregiving – along with professional home care support or respite care – is enough.  However, there comes a point when loved ones with dementia require more care around the clock, and increasing assistance with daily hygiene tasks, which becomes more than any one household can manage. This is the time when hospice can typically step in and help to take over the increasing challenges and tasks.

7 Signs it’s time to connect with hospice

Here are seven of the most common signs it’s time to reach out to local hospice agencies and learn more about what they offer and whether your loved one qualifies. 
  • Your loved one can no longer walk, or transfer from a chair, standing, bed, etc. without support.
  • They can not get dressed or undressed without assistance.
  • They can’t correctly bathe or perform routine hygiene tasks.
  • You’re taking them to more frequent doctor’s visits or making increasing trips to the urgent care, ER, or hospital.
  • Incontinence and soiling themselves are not only the norm, but they can’t take care of the accidents without help.
  • They have trouble drinking, eating, or speaking on their own. In fact, without you there, they may not eat at all.
  • You are burning out. 
Even if it isn’t time for us to step in, we can refer you to some of the area’s most qualified and compassionate home care teams. Then, we can partner with them when hospice criteria are met.

Benefits Of Hospice Care For Loved Ones With Dementia

There are so many benefits of enlisting hospice care to support the later stages of dementia. 

We’re there for family, too

First and foremost, hospice is for the family, too. Your hospice team pays close attention to the needs of the client, but also to their primary family members. We’re here to provide information and education, orchestrate the delivery of durable medical equipment as needed, and provide any and all support we can. Plus, you have access to 24-hour hospice care support on the phone, so you’re never left alone – or wondering – no matter what time of the day or night.

Regular visits from hospice nurses and aides

Our hospice nurses visit according to the needs of the client. In most cases, these visits take place about once per week. Those visits may increase to two or more visits depending on the situation or as the client comes nearer to the end of their life. We also have a team of compassionate aids who step in to provide bathing, clothing and bedding changes, and general grooming needs.

Support from the extended hospice team & volunteers

Hospice care includes a multi-faceted team of individuals who are there as you need them. This includes our social workers, chaplains, and a grief support team.  In addition to our professional hospice team, you also have access to support from our incredible team of hospice volunteers. We have volunteers able and willing to do just about anything, from providing a break to primary caregivers or grocery shopping to helping with gardening chores or walking the dog. Ask for just about anything that you need or could help with – and we’ll see what we can do.

Hospice Patients Don’t Always “Play by the Rules” When it Comes to Dying

We referenced this above, but it’s worth another mention. Unlike many terminal or chronic illnesses, dementia patients don’t “play by the rules” when it comes to the normal dying processes. For example, many of the things that quantify the end of life for a non-dementia patient (losing interest in the outside world, inability to complete daily tasks, or ceasing to communicate) are normal for dementia patients – even when they have many months or years to live. The dementia journey can be long, but hospice agencies are here to do all they can once your loved one meets the qualifying criteria. 

Connect With Hospice of the Golden Isles For More Support

Are you interested in learning more about how palliative or hospice care can support you or a loved one with dementia? Do you sense it’s time to bring in additional support to improve the quality of life for your loved one, yourself, and the family? Contact Hospice of the Golden Isles.  We believe everyone has the right to live out their journey with grace and dignity, free from pain. Our caring team provides the highest-quality hospice and palliative care that promotes our patients’ dignity, provides for their physical comfort and pain management, and is tailored to their unique social, emotional, and spiritual needs. We also provide caregivers with the support they need to care for their loved ones.

Music Therapy In Hospice Care

music therapy in hospice care

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.

Studies Show Music Therapy Is Effective In Hospice Care

Studies show that music that appeals to the listener can have remarkable physical and emotional effects, including lowered blood pressure and heart rate, pain management (palliative care), decreased anxiety or depression, calmer breathing, and improved quality of life (NCCIH).  Many hospice patients become homebound and then housebound, limiting their connection with their community and making it harder to focus on anything other than their pain, fear, discomfort, and loss of autonomy. Regular music therapy is a beautiful and natural way to provide invaluable comfort and support.

Music Therapy In A Hospice Setting

Music therapy can take many forms in a hospice setting; it doesn’t have to be hospice-led. That said, many hospice agencies have a vast network of community and regional musicians who enjoy volunteering their time to play or sing for our clients, so you may find that going through a hospice agency connects you with musicians you may not have been able to access otherwise.

You can have music therapy wherever you are

You can request music therapy in any setting where hospice services are provided, whether in a hospital or nursing home setting, a hospice house, or a home hospice environment. Depending on the availability of the volunteers or organizations offering music therapy, you may have it as often as once per week or on a bi-monthly or monthly basis.

Hospice volunteers often provide music therapy

Sometimes, music therapy happens via our own crew of amazing hospice volunteers. Anyone who graduates from our rigorous hospice volunteer training program provides a list of their talents, interests, and hobbies.  Many musicians or singers love to play or sing for our clients. Or, some volunteers are music aficionados of a specific genre or just plain love music. In that case, they’re happy to visit clients once a week and bring a playlist of requested or suggested songs. They can quietly (or not!) listen to music together, which brings great comfort and solace to clients.

We coordinate with local professional musicians

Similarly, many professional musicians know hospice agencies offer music therapy and connect with us. We have everything from professional singers and traditional instrumentalists to musicians who can bring their harp, indigenous flutes, percussion instruments, and more. 

Families also benefit from music therapy

Hospice isn’t just for the client. We spend a lot of time reminding our client families and the public that hospice is for the family too! Our team is here to support the client, their primary caregivers, and their families. Music therapy is a wonderful example of that. When you or your loved one schedule music therapy, whether it is a small acapella singing group or a solo musician, you’re welcome to invite your family to be there too. It can provide an incredibly moving experience as everyone gathers, connects, relaxes into the moment, and enjoys beautiful music together in the same space. 

Create your own music therapy playlist

While hospice agencies and volunteers do their best to provide music therapy, we also recommend that individuals or families create their music therapy playlists. Live music is hard to beat, but if music therapy yields benefits like pain management, reduced anxiety or depression, and calmer breathing or resting, take advantage of that. If your loved one is still responsive and able to communicate, ask them what songs or sounds provide the most relaxation or pleasure and add those to the playlist. If they are non-responsive, pay attention to their body language and breathing rhythms if they are non-responsive. Look for signs of relaxation or relief (slower breathing, relaxed muscles, less fidgeting, smiles, attempting to sing or hum along, etc). Your hospice nurses and care team can also help you watch for signs that certain pieces or sounds (nature, rain, birds, etc.) have a positive impact.

Music can also be part of the end-of-life plan

Anyone working in the worlds of birth and death honors the parallels of these sacred transformations. Just as pregnant women create birth plans, many hospice patients like to make end-of-life plans that outline their wishes for when they’re dying and may not be able to express themselves or for their memorial or celebration of life. Music can play a role in this realm as well. Some of our clients put together playlists of music they want to play in the background when they are alone or actively dying. Some of these songs (or others) may also be a part of their memorial plans.

Ask Hospice of the Golden Isles About Our Music Therapy Program

Would you like to incorporate music therapy into your hospice care plans? Contact Hospice of the Golden Isles. We have an incredible network of hospice volunteers, including musicians who provide music therapy. It would be our honor to help make your hospice experience as comfortable and peaceful as possible.

The Role Of Pets In Hospice Care

the role of pets in hospice care

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:

  • Cats
  • Birds
  • Pigs
  • Rabbits
  • 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.

The Role Of Hospice Volunteers

the role of hospice volunteers

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 All

Whether 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 Team

When you decide to move forward with hospice services, you benefit from a wide range of services and benefits. This includes:
  • Doctors 
  • Nurses 
  • Home aides 
  • Social workers 
  • Chaplains 
  • Volunteers
All of these people come to your home, hospital, assisted living facility, or anywhere else the client chooses to spend their remaining months, weeks, or days.

The Volunteers Are Professionally Educated And Trained

Hospice 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 & fundraising

Some 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 fundraising

Most 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 support

Finally, 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 you

Depending 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 care

In 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 support

Our 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
They are by no means housekeepers, but they can provide light duties in these areas to help pick up the slack. 

Companionship

Much 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!
Strong and caring bonds are formed when our volunteers show up week in and week out, doing things the client requests or enjoys. 

Learn More About Hospice Volunteers 

Are 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!

Dying vs Active Dying: What’s The Difference?

dying vs active dying whats the difference

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 Dying

The 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 water

Most 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 unresponsive

By 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 movements

The 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 delirium

The 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 pressure

As 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 hues

As 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 & Family

Are 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 Dying

honoring a loved ones resistance to food when dying

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 Process

Historically, 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.
The more we understand the role of waning appetite and the natural death process, the better we can support the ones we love as they die.

Forcing Food (Or Guilt Feeding) Causes More Harm Than Good

This 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 Go

In 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 Eat

Again, 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 team

Your 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 pressure

It’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 plan

The 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 moist

Once 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 Support

Are 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.