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hospice care

Hospice Care: When is the Time Right?

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It’s close to the end. You know it. Your family knows it. The doctor and medical staff know it. (“Close to the end” is a strange combination of perspective and reality. And “knowing it” is an exercise in faith and reality.) When is the time right for hospice care?

Most hospice agencies say families and care-partner teams often  wait too long to make late-life and end-of-life decisions. Some even wait until the final weeks, or even days, to make the call for hospice care. In these cases, preventable pain and suffering have long since set in. 

So when is the right time for hospice care? If you’re building a life-care plan — even if you and your loved one still expect many more healthy years — the answer is NOW. 

Preparing for Hospice Care is Key to a Well-Made Life Care Plan

We know. The decision-making process is far from easy. But hospice care needs to be seen as a resource, not a devastating conclusion. Hospice care provides comfort care and coordinates other important support services for both the individual and their loved ones at end of life. 

To be eligible, a doctor must affirm the individual’s condition will likely result in death within six months. The physical realities will be quite obvious. It’s time to mobilize hospice and all of its comfort, support and resources when an individual is experiencing one or more of the following:

  • Increasing falls
  • Severely declining cognition and memory (dressing, eating, walking, toileting, etc.)
  • Increasing visits to urgent care, ER and hospital stays
  • Deteriorating physical condition (skin tears, open sores, infections, etc.)
  • Significant weight loss

A good plan factors these end-of-life realities and doesn’t delay action when they arise.

Increasing Falls

Numerous objects around a household could cause a trip and fall: electrical cords, dimly lit spaces, bunched-up rugs, grandchildren’s toys, damp floors, the list goes on. But what happens when misplaced objects and untidy rooms are no longer the greatest threat to navigating a home? 

Weakness in muscle and bones as well as poor vision and balance associated with advancing age and illness are dangerous obstacles in themselves. Your loved one may get around the home for many years with limited assistance. But when they’re too weak and disoriented to move safely from the bed to a chair, it may be time to consider hospice care or another type of additional support.

Declining Cognition, Memory & Function

Again, this may occur on a sliding scale. Declining cognition and memory, often occurring with Alzheimer’s and other types of dementia, may seem relatively harmless at first. But there will come a time when your loved one won’t remember the reason for a trip to the kitchen or how to safely operate hazardous appliances and utensils once there. There will be a time when simply functioning — eating, toileting, bathing, etc. without help — is impossible. 

When that day comes, hospice agencies can coordinate support to help families avoid and respond to emergencies and accidents.

Increasing Visits to the ER and Hospital

Trips to the emergency room and hospital stays for stabilizing or life-saving care may happen once or even several times. Chronic cardiopulmonary conditions, for instance, may bring an individual to the brink of death only to be revived with breathing treatments and sent home within hours. It’s when these trips become too frequent that families must consider bringing care directly to the individual. 

Numerous hospital visits for emergency care are taxing on your loved one, who must not only endure poor health but also ambulance transport and the hectic rigors of lifesaving treatment — wondering which episode may be their last. They’re heart-wrenching to families who also suffer and anticipate grief alongside their loved one. Furthermore, they burden emergency transport and care systems who must respond to the same address time and again.

Hospice agencies will provide expert medical staff, medications, supplies and other resources for use at home. A hospice nurse, family and other loved ones may administer emergency care in comfort, without unnecessary transport or intervention.

Deteriorating Physical Condition

In most cases, end of life comes with pain, illness and general discomfort. Body systems gradually shut down — including the immune system and natural healing processes. Minor cuts and scrapes worsen to skin tears and open sores, often deep, painful and infected. These may be bed sores caused by the pressure of lying or sitting in one position.

When pain and suffering of this scale occurs because one is no longer capable of moving on their own, it’s likely time to involve hospice care. Hospice professionals will treat active wounds and ensure your loved one is moved frequently to avoid additional pressure sores.

Significant Weight Loss

Your loved one likely will lose appetite in the end, followed by what appears to be rapid and unhealthy weight loss. While poor appetite and weight loss could accompany a terminal illness like cancer or organ failure, it also could simply signal the natural shutdown of life processes.

Yes, it may be painful for you, as a loving and devoted care partner, to witness your loved one shutting down. But if your loved one no longer requires food to sustain bodily functions, well, they no longer need it. Hospice agencies administering end-of-life care recognize the importance of letting nature take its course — and will help you to make peace with that decision.

Plan for Hospice Care … Before Crisis Hits

OK, so pretty much everyone aims for their loved one to be home and independent as long as possible. That’s understandable. NO ONE wants to surrender control over their living situation to “the system.”

But hospice care isn’t a “system.” It’s a resource — covered by Medicare, Medicaid and major insurance plans — that can be planned many years in advance and delivered in home. It can be a valuable part of your community of support. The planning process considers many quality-of-life benefits including:

Even if your loved one is not currently eligible for hospice, alternative palliative care options can deliver many of the same comfort services, treatments, medications and resources, with no out-of-pocket cost, outside of the six-month window.

The care-partner team must face end-of-life care with a clear head and without bias. Planning ahead can save headache, heartache and uncertainty. If you need help, Caregiver Support and Resources, LLC can help you to build a plan today and refer you to a great hospice agency tomorrow.

Hospice and Palliative Care

Is There a Difference Between Hospice and Palliative Care?

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Hospice and palliative care deliver many of the same services. They both ease pain and suffering from serious conditions. But there’s a significant difference between hospice and palliative care: the expected outcome.

Palliative care is delivered when a medical condition, no matter how serious, is not at the moment considered to be life threatening. For example, an individual may enter palliative care while receiving cancer treatments or after a serious car accident with a generally positive outlook that recovery is possible (and likely). On the other hand, hospice is considered end-of-life care as most individuals are expected to live six months or less. It’s not a surrender, but rather a comfort tactic for the individual and a resource haven for care-partner team members. 

Both Hospice and Palliative Care Deliver Comfort Care … but for Different Reasons

Let’s break down the similarities and differences a bit further.

Hospice Care

Hospice is often one of the final steps in a well-made life-care plan. At this stage, medical professionals and care-partner team members agree that the individual will die soon. Whether they have a terminal illness like cancer or dementia or they’re simply at the end of a lengthy and dignified aging process, hospice delivers whatever level of comfort is necessary to pass peacefully. Hospice care can be administered at home or in a nursing home or assisting-living facility.

At this stage, there’s very little concern over how to achieve comfort. Doctors would normally steer clear of potentially addictive opioids for pain management, but individuals under hospice care don’t need to be so cautious. Dying can be a very painful and uncomfortable process even without terminal illnesses. Individuals often experience everything from severe discomfort to depression. Doctors may prescribe:

  • Strong pain medications (like the synthetic opioid Fentanyl)
  • Antidepressants 
  • Anti-anxiety medications
  • Antipsychotic medications (to address common hallucinations)
  • & More

Contrary to popular belief, the goal of hospice is not to simply “dope” elder loved ones. Staff administer appropriate doses of meds and other treatments to provide comfort, improve appetite as best as possible, and allow the person to enjoy remaining time with loved ones.

Hospice care also supports care partners, family and friends. Watching a loved one die is a heartbreaking experience, quite often accompanied by powerful feelings of sorrow, anger, confusion and even guilt over not being able to “do enough.” Hospice staff personally tend to immediate emotional needs and refer individuals to counseling services, when appropriate. 

Most medical insurances, as well as Medicaid and Medicare will cover all hospice costs. To be eligible, you will, however, need a hospice doctor and a private physician to certify in writing that your elder is terminally ill and expected to live six months or less.

Palliative Care

Palliative care also delivers comfort for debilitating diseases and conditions, but with a more positive prognosis. Individuals under palliative care are expected to be cured or at least recover to eventually require little or no further medical intervention. It can cover earlier stages of many of the same conditions treated under hospice: cancer, congestive heart failure, kidney failure, Alzheimer’s disease and other forms of dementia, etc. (In fact, my life partner/care partner Brian LeBlanc receives palliative care treatments for his advancing Alzheimer’s and vascular dementia. He is still quite lucid and functional, likely with many great years left. But his conditions have all sorts of effects, from hallucination to disorientation, that require comfort care.)

The aim is to improve quality of life. A medical condition could be horrendous for many months or even years. Surgeries and other treatments like chemotherapy to beat cancer can be even more unbearable than the diseases. Recovery can be a long road, but palliative care sees the destination and wants to get there as comfortably as possible. 

Much like hospice, palliative care professionals may provide strong medications like opioids to manage pain and discomfort. Treatments may also include stabilizing care and physical therapy to keep the body strong in its prolonged fight. Also like hospice, palliative care addresses mental health for both patients and families.

Conditions change. Seemingly overnight, an illness could become deadly that wasn’t terminal when beginning palliative care 18 months ago. Palliative care can easily transition to hospice, if end-of-life care becomes necessary. It’s also mostly covered by Medicaid, Medicare and most major health plans.

Hospice and Palliative Care Are Different, But They Deliver Comfort When Needed Most

You never know what life’s journey will bring. Over 1.5 million Medicare beneficiaries received end-of-life hospice care in the U.S. in 2018. The World Health Organization estimates over 40 million people worldwide require palliative care each year. We all deserve a life worth living, and comfort care provides that service for those who need it most.

We recommend having these conversations with your elder loved ones early in the planning process, so everyone on the care-partner team can assess end-of-life care with a clear head and without bias. If you need help, Caregiver Support and Resources, LLC can help you to build a plan today and refer you to a great hospice agency tomorrow.

grief management

Grief Management When a Loved One Enters Hospice

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Your elderly mother rests comfortably in her bed upstairs, while a gathering of family members sit crying in the living room downstairs. A hospice nurse has just made her first home visit and administered some medication to quell a nasty coughing fit. Mom’s terminal illness has progressed greatly in recent weeks, and it’s clear to everyone that it’s “the beginning of the end.” It’s time to begin thinking about grief management.

The hospice nurse comes downstairs and rests his hand on your shoulder. Thanks to a well-considered life-care plan, he says, “You’ve made the right choice. Everyone will be fine.” You’ve built a great team of care partners — including experts from hospice and other medical professions — and your mother’s comfort is assured in her dying days. 

So why don’t you and your family feel better? Why is it still so hard? That’s grief in a nutshell. It’s going to be hard. Saying goodbye is never easy. And coping with the impending sense of loss that’ll soon be reality. 

Grief affects us all differently. Your sadness at the thought of losing your mom is different than your 12-year-old son’s at losing his Gram-Gram and different still from your father losing his wife. Thankfully, hospice agencies provide grief management and bereavement support to families before, during and after death.

6 Common Hospice Grief Management and Bereavement Services

Hospice is there to help not only your loved one as they say goodbye, but also you and yours as you navigate heartbreak and other complex emotions that surround loss. Here are a few things most hospice agencies will do or coordinate for grieving families.

1. Individual and Family Support Counseling

Sometimes it just helps to talk with a counselor, one-one-one or with your family. You can share feelings of sadness, loneliness, helplessness, guilt or even anger. You may also honor your loved one by sharing their life story: 

  • Raising a family
  • Good and bad memories
  • Accomplishments and failures
  • Life lessons

Discussing your feelings in a safe environment can help you and your family to make sense of loss, cope with strong feelings and move on. 

2. Grief Therapy Group Sessions

Hospice agencies may refer families to group therapy resources. Group sessions can be helpful to discuss strong emotions with other individuals and families having similar feelings and experiences. They, too, likely feel deep sorrow at losing a dear loved one, regret for time lost or common family problems, and guilt or helplessness over not being able to provide expert care at home.

There’s strength in numbers. It helps to know you’re not alone. (And as an added bonus, you can connect with others to lean on for support and move forward together.

3. Supporting Young Loved Ones

Children, adolescents and even younger adults can feel profound sadness after a loved one’s death. Most kids especially lack perspective and haven’t lived enough life to know that death is a part of it. They’re often very fond of an elder (who doesn’t love Grandma’s cookies or Grandpa’s secret stash of candies?). So they can’t understand why they’re sick, dying or on their way to “the Great Beyond.” What’s more, telling them that their loved one is in “a better place” does nothing to soothe extreme sadness seen through the eyes of a child.

Hospice care agencies and direct support staff know this well. They’ve often helped hundreds or thousands of care recipients and families with grief management, directly or through referrals to helpful resources. Staff are trained to calmly counsel adults and children alike who feel sad that their loved one is in pain, dying or deceased. Hospice may also provide or refer respite care for families who need help in attending to youngsters during trying moments.  

4. Getting Through the Holidays

The first holidays after a loved one’s passing are often the toughest. As elders die, oftentimes, long standing family traditions go with them. Your great uncle’s Thanksgiving dinner, Grandpa’s Christmas party or sister’s annual Easter Egg hunt will no longer happen, unless someone takes up the reins to continue or create new memories. But if nothing else, their empty seat at the dinner table can be very unsettling. 

There’s an emptiness in your hearts. Hospice agencies often continue to provide grief management, support and resources for many months after an elder’s passing. This may come as direct outreach during sensitive times (staff assigned to your care often document birthdays and other special occasions) or through periodic mailings of heartfelt messages or educational material on the grieving process.   

5. Religion & Faith

Millions of Americans take their religion and faith very seriously. Many others simply expect their elder’s end-of-life care and final arrangements to align with their faith and traditions. 

Some hospice care recipients and families have strict codes about meals and medications that may be administered. Some have wishes for final services, perhaps a living wake or celebration of life. Hospice will coordinate a certain religious or lay leader to officiate a service and/or administer last rites. There’s something truly comforting about professionals handling and coordinating care and arrangements with deep respect for your elder’s wishes. 

6. Memorial Programs

A hospice patient is not just a patient. They’re an individual with wonderful human qualities and dignity up to the very end. Hospice staff get to know your loved one on a very deep and emotional level. Some agencies honor their life and legacy with annual memorial programs recalling the individuals for whom they provided end-of-life care and comfort during the year. (A very popular one I recall is an annual Tree of Life celebration, during which the hospice organization provides holiday ornaments to families and invites them to place a special ornament on their tree and say some kind words of remembrance, if they wish.

While your grief and sorrow may take years to subside, it’s nice when others remember your elder fondly and to know theirs was a life worth living.

We Can Refer You to Hospice Grief Management and Bereavement Services

Don’t wait too long to discuss various hospice services with your elder, loved ones and other care partners. Hospice is often an important (and necessary) step in end-of-life care. You’ll be happy your loved one can die in comfort and dignity — and that they’ll be there each step of the way with grief-management support and resources.

If you need help, Caregiver Support and Resources, LLC has over 25 years of experience with all aspects of life-care planning and team building, including hospice referrals and patient advocacy for individuals with terminal illnesses such as dementia. We are happy to provide guide your process in a caring and compassionate way.

conversations about hospice

Don’t Wait for Important Conversations About Hospice

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No one wants to envision their dying moments. No one wants to picture a loved one dying, either.

But death is a part of life, and it’s important to have important conversations about hospice before it’s too late. Hospice can deliver comfort and peace of mind. Pre-planning and deciding what you want your dying process to look like and how you want to die is the greatest gift to those you love.

The average duration of hospice enrollment in 2018 for over 1.5 million Medicare patients was about 90 days while the median length of service was just 18 days, according to the National Hospice and Palliative Care Organization (NHPCO). That’s not a lot of time, but it may seem like an eternity when someone you love is hurting. Once you have a diagnosis or your physician has indicated that the end may be coming, that is the time to call hospice. The better the staff from hospice can know a person before they are actively in the dying process, the better they can personalize their care.

Too often, family members and care partner teams — consciously or subconsciously hoping to stave off the inevitable — wait too long to discuss end-of-life care. That can be a physically and emotionally painful mistake for everyone involved. So let’s prepare for the most comfortable and dignified treatment in those final moments. We urge developing and implementing a plan with your loved one now while emotions are calm and everyone can assess realities from a fresh perspective.

How to Discuss Hospice Care with Your Care Partner Team

Everyone must first understand that hospice care is not a surrender. It’s common for almost everyone to fear death — and to avoid acknowledging its inevitability. Hospice care is simply an often-necessary resource to ensure your elder’s wishes and comfort are considered as they go through the process of passing away. And, yes, it’s often a process lasting days, weeks or even months of euphoric ups and devastating downs.

Here are some great talking points:

Comfort Care

Most hospice cases involve terminal illnesses like cancer, organ failure and dementia. Unfortunately, dying moments often come with pain, sickness and overwhelming discomfort. Discuss these realities early within the care partner team to:

  • Acknowledge that pain and sickness will likely be a factor,
  • Allow the care recipient to express their pain management wishes,
  • Consider everyone’s opinions and emotional needs, and
  • Plan and mobilize resources for when the time comes.

A dying person may not be physically or mentally able to express what they need. Weighing all options and making decisions before health crises strike will eliminate needless confusion in an emotional end-of-life scenario. Your care partner team will feel empowered by following a person-focused plan with steps agreed upon long before.

You’ll know your mother, uncle, husband or whomever agreed to a certain pain medication, without the “they wouldn’t have wanted that” aggravation and ambiguity.

Ice-breaker: “Mom, we know you don’t like medications, but tell us what makes you feel better when you’re in pain.” Centering the conversation on what makes her feel better prompts her to open up and express what she would prefer. It may be morphine — or maybe even a shot of Irish whiskey.

Home Environment

Many individuals choose to receive hospice care where they’re most comfortable — at home. They’ve often lived there for many years, raised families and collected happy memories. In many end-of-life cases, they’re enduring considerable pain and illness with only those memories to lift their spirits.

It’s only fitting they pass away in peace where and how they choose.   

Home care accounted for 98.2 percent of hospice care provided in 2018, according to NHPCO.  Included in this data set are individuals who received care in their home, assisted living facility or care community.

A great life care plan should include where the person wants to be and the environment they choose for their final days. Some simply want music and art around them, a comfortable bed with fresh sheets, and soft pillows. Others are selective about whom they wish to see and when in their final days. Some anticipate their physical condition and appearance at the end may be unattractive or uncomfortable for loved ones. Naturally, they may wish only close immediate family members to enter their room or home.

Hospice agencies work with the care team to create the desired home environment.

Ice-breaker: “Uncle Greg, I remember you said The Beatles were your favorite band growing up. What’s your favorite album?” He’ll likely open up about Sgt. Pepper or the White Album, and the conversation may flow naturally to a particular song he’d like to hear in the end.

Spiritual and Emotional Care

People don’t necessarily have to be religious to require spiritual and emotional care at end of life. The same goes for their care partners. Approaching the end, many embrace spirituality and a wholesome environment in preparation for what awaits “on the other side.” A care recipient may desire certain hymns, prayers or ceremonies. They may want a certain priest, pastor, rabbi, imam, shaman, spiritual adviser or other clergy member to deliver services.

Care partners may similarly require counseling or spiritual services, whether they’re family or close friends. End-of-life care can be stressful, scary and uncertain for everyone involved. Establishing ritual needs ahead of time often makes the entire care circle feel comforted and less alone. Having clergy present can make sense of the “grand design” by higher powers known by many names, especially when it seems senseless to say goodbye. 

Ice-breaker: “Sis, what’s that verse in Psalms you always enjoyed so much?” She may recite the verse word-for-word and perhaps recall a local pastor who made perfect sense of its message. Such a dialog may lead to final prayers and who should say them.

Are You Ready to Have the Hospice Conversation?

Developing the final part of a life care plan can be heartbreaking for everyone. But it’s critical to address the end-of-life care that may be necessary to relieve suffering and provide support.

You could even include a hospice agency and employees in your care partner team. They’ll enjoy truly getting to know the individual and their loved ones before things get bad. As a result, they’ll know how to better develop person-centered care around your own wishes, personalities and needs.

Don’t wait until the crisis hits. Have the discussion early. You don’t need all the answers in one sitting. A loved one understandably may not want to discuss their final days. But we know some great ice-breakers to usher conversations about hospice along and piece together the puzzle of final wishes. If you need help, Caregiver Support and Resources, LLC can help you to build a plan today and refer you to a great hospice agency tomorrow.

benefits of hospice

What are the Benefits of Hospice Care?

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We always hope the end is comfortable — for ourselves and our loved ones. But life (and death) sometimes bring circumstances beyond our understanding or control.

That’s where hospice comes in. It provides comfort and dignity to a dying person, family and friends. Death can be a painful and uncomfortable process, especially with terminal illnesses that affect so many.

Some 1.55 million Medicare beneficiaries received end-of-life care through hospice agencies in 2018, according to the National Hospice and Palliative Care Organization (NHPCO). Nearly 51 percent of Medicare decedents that year received assistance from hospice in the end. As our generations grow older — most notably an increasing number of aging Baby Boomers — the total of likely hospice recipients only grows larger.

Let’s Discuss the Benefits of Hospice for Your Life Care Plan

As you build a strong life care plan for yourself and elders, it’s natural to ponder the benefits of hospice care. Will it be necessary? How can it help? What bad could happen without it?

Comfort

The ability to provide strong pain-management medications and therapies is one of the most obvious benefits of hospice care. Hospice is authorized to provide pain-killing opioids like morphine and Dilaudid and anxiety meds Valium and Ativan, which doctors would otherwise avoid for risk of addiction.

Hospice patients are typically diagnosed with six months or less to live. The goal is to make the remaining time comfortable, without worrying about the types or quantities of medications required.

The most common terminal diagnoses requiring hospice care include cancer (29.6%), heart/circulatory diseases (17.4%) and dementia (15.6%). Terminal illnesses in their late stages typically involve extreme pain, agitation and weight loss only relieved by strong medications.

Home Care

Most people choose to pass away at home, if possible. Who could blame them? It’s where family and many great memories took root. Hospice care helps to create a home atmosphere even if an elder must continue in an assisted-living home or care community.

Hospice delivers all the medical care and support necessary, wherever it may be needed, without the overwhelmingly cold and impersonal hospital atmosphere. No one enjoys doctors and nurses popping in unannounced to monitor vitals or administer treatments. Hospice care involves an intimate circle including only your chosen care partners.

Financial Relief

Hospice care is covered by Medicare, Medicaid and most private insurance. Most individuals have no out-of-pocket costs associated with hospice and its services including:

  • Prescription medications
  • Medical equipment and supplies
  • Doctor and nursing services
  • Dietary counseling
  • Grief counseling and respite care for both the individual and their care partners

At end of life, frequent hospital visits can cost families thousands in uncovered medical expenses. Hospice care works to ensure such visits are unnecessary. However rare, short-term inpatient care for pain and symptom management are covered under Medicare and Medicaid.

Spiritual Life

Many people nearing their final days understandably look to a higher power for comfort and understanding. It’s common, whether they expressed devout beliefs or weren’t particularly spiritual at all. They often wish to talk about paths through life including families, personal choices, jobs and the like.

Some like to know what awaits “beyond.” Others simply enjoy being close with a person of faith.

Hospice agencies make every effort to include clergy from your own religious denomination or place of worship. Hospice helps to coordinate any religious visits, services, prayers and rituals with a network of established clergy of all faiths. 

Care Partner Support & Counseling

Care partners endure their own traumas while tending to a dying elder. They feel grief both before and after loss. They feel overwhelmed with the sometimes heavy burden of witnessing suffering.

Hospice agencies provide access to grief and support counseling for both the care recipient and their care partners. This often includes respite care for loved ones who need a brief break, as well as professional counseling to understand and manage powerful feelings.

Hospice: Bringing Comfort and Dignity to End of Life Care

The average enrollment in hospice is roughly 90 days. Individuals at end of life typically receive full hospice services for less than 20. A care partner team should not wait too long to have these important conversations. For the best quality care, you want enough time for the hospice agency and its staff to get to know your loved one and the needs of everyone involved.

If you need help, Caregiver Support and Resources, LLC has over 25 years of experience  with all aspects of life care planning including hospice care. We’re happy to provide referrals and guide the process in a caring and compassionate way.