Surprises can be fun. A surprise birthday party can be an unexpected joy. A surprise in the plot of a movie can add a suspenseful twist. When it comes to the health or longevity of a loved one, however, surprises can be unbearable. For this reason, many family members of hospice patients have been known to ask hospice nurses or doctors, “How much time do they have left?” While a specific month, week, day, or hour amount is helpful for families so they can emotionally prepare, in many instances, hospice care professionals won’t deliver a specific answer. 

The Variables

As much as families would like one, there is no hourglass whose sands count down the moments of life their loved one has left. Doctors and nurses can make estimations based on their own experiences with past patients who displayed similar symptoms or experienced the same conditions. Still, these are simply educated guesses based on one’s own experience, not a bedside hourglass. There are myriad reasons why some people live longer and some pass away sooner than others. 

The Danger in Overestimating

Another reason why hospice nurses and doctors may be hesitant about providing answers based on their experiences is the severe danger in overestimating the patients’ longevity. It’s understood that those administered to hospice care could pass at any time. Some may continue living long past the doctors’ furthest estimations. Others could pass away in their sleep soon after arriving. When a hospice nurse or doctor provides an estimate that spans a fair amount of time out and the patient dies much earlier than this expected time, the surprise can be devastating for family members and loved ones. For this reason, many hospice professionals will resist the temptation to deliver an overly specific estimation regarding a patient’s lifespan. 

The Safe Answer

Despite this apprehension over delivering an incredibly specific lifespan estimation, hospice professionals will still give patient families and loved ones reasonably safe-but-accurate input into their conditions when asked. An experienced hospice nurse or doctor may be able to tell loved ones whether a patient has hours to days, days to weeks, weeks to months, or months to years left. This may be all the information they can reliably give, but is still specific enough to help loved ones emotionally prepare for the loss of this individual. Of course, these standards will vary depending on the hospice professional, the patient, and their ongoing rate of decline. 

They’re Not Lying to You

With whatever answer you receive from your hospice care professional, it is essential to know that no one is lying to you. There is no incentive for anyone to be deceptive about the lifespan of a patient. What may feel like secrecy is likely uncertainty—none of which is anyone’s fault, but simply the complicated nature of patient decline. It is vital to trust your loved one’s hospice care professionals and believe they are doing everything in their power to provide comfort, clarity, and honesty throughout the process.

No matter their specialty, nurses are some of the most wonderful people to walk the earth. The combination of proficiency, professionalism, focus, and heart that goes into being a nurse is what makes the role such a highly regarded position by patients, families, and other medical support staff. There is one kind of nurse, however, that is arguably different than any other variety of nurse—the hospice nurse. While we’re not attempting to say that hospice nurses are better than other types of nurses, the role does require a very unique kind of person. In this piece, we’re going to look at some of the reasons why hospice nurses are such a special subset of professionals within the nursing profession. 

Hospice Nurses Have an Adaptive Pace

To say that hospice care centers differ from other healthcare establishments is an understatement. Where the goals of most hospitals and clinics are to help restore the patient back to health as quickly as possible, hospice aims to provide the maximum amount of comfort as to patients and assist them through the dying process. Because of this, the daily pace of a hospice nurse differs significantly from other healthcare professionals. A hospice nurse’s pace must mirror the pace of the patient. Determining this pace is a unique skill that experienced hospice nurses develop over time. 

Communication With Patient Families

While nurses across the medical field must be master communicators, hospice nurses have the immense task of communicating the particulars of a hospice patient’s status with family members. Family members of hospice patients are justifiably emotional and in need of answers. Choosing the right words to deliver certain pieces of information accurately, yet not harsh, is a skill less taught and more developed with years in hospice care. To make matters more difficult, hospice nurses are frequently asked point-blank questions about a patients’ life expectancy and other variables. In many of these instances, there are no precise answers to deliver, but the proper feedback must be given regardless. 

Hospice Nurses Are Champion Listeners

In addition to caring for the physical needs of hospice patients, hospice nurses have a unique superpower—listening. There may be times when hospice nurses have no answers for patients or family members alike. What they will have to give is a caring ear. The slower pace of hospice care allows nurses the unique opportunity to lend an ear and help shoulder emotions from patients and loved ones alike. 

Hospices Have to be Tough

Being a hospice nurse isn’t easy. One would think that they would have to remain in a bubble to keep from growing emotionally attached to a patient in the dying process. While this would be a safer way to work, they don’t—they allow themselves to be vulnerable and fully embrace their patients as people deserving of such respect. While this is understandably painful for them, they understand that being vulnerable is the only way to deliver the level of care necessary for their patients. Though they may shed a tear along with loved ones, they can return to work to the next day knowing that they gave their all in helping their patient navigate the dying process. Many attempt to be hospice nurses, but can’t handle the constant loss that comes with the job. While this is unfortunate, it means that those who remain are truly giving their all. 

The world, as most of us know it, has changed due to the COVID-19 pandemic. Hospice and palliative care professionals are also taking the steps necessary to ensure the safety of patients and care staff alike. The following is a relatively broad overview of some of the changes that have occurred across the hospice and palliative care industries. Some of these changes may differ based on different organizational protocols, local ordinances, and the rate of infection over time.

Minimizing Patient Exposure

Many new policies have been put in place in an attempt to limit patient exposure to possible carriers of the COVID-19 coronavirus. Some of these new rules include limiting specialist traffic through patient homes and care facilities. While doctors, registered nurses, and other specialists deemed officially “necessary” to patient care are allowed careful access, many others are now barred from physically accessing these facilities or patient homes. Most social workers, certain therapists, chaplains, and visitors must now communicate with patients and their families via video conferencing or some other form of telecommunication. 

To further minimize possible virus spread within facilities, most specialists are screened for infection before beginning work. This screening process includes a comprehensive questionnaire about their past whereabouts, behaviors, and with whom they have come in contact. Their temperatures are also taken to detect possible fever. 

Face Masks

Due to the ease of transmission of the COVID-19 coronavirus from respiratory droplets, most caretakers are required to wear masks that cover their nose and mouths while working with patients. Most of these masks are likely surgical facemasks, though some may wear cloth facemasks where surgical facemasks are in shorter supply. 

Those Working With Infected Patients

For patients who have tested positive for the COVID-19, entirely different protocols apply. Staff members caring for such patients (where they exist) are required to don the appropriate personal protective equipment—including custom-fitted N95 facemasks.

Video Conferencing

Though communication with patients is important, most interactions with patients and their families, chaplains, therapists, or social workers will continue to take place via video conferencing to limit the patient’s exposure risk.

Like you, we can’t wait for this pandemic to be behind us and for regular visitation to resume. However, for the sake of patient and staff health, we must remain vigilant. We’re all in this together. 

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There are various ways that hospice care differs from standard treatment in hospitals or other medical centers. The primary difference is the aim of the care. Much of the medicines in hospitals are prescribed to successfully treat the patient’s condition and even bring about recovery. This care may result in some treatments that come with adverse side effects. On the other hand, hospice care is typically recommended when it is evident that the patient will likely succumb to their condition within the next six months. 

Because treatment of the patient’s condition has been all but suspended, there may be fairly significant changes to their regular medications. 

Hospital Medications

A patient’s main medications in a hospital setting are in an attempt to treat their condition. These medications may have adverse side-effects, many of which are treated with secondary medicines. An example of this may be chemotherapy, which is known to have immensely harmful side-effects. Secondary medications may be administered to alleviate such side-effects, such as anti-nausea drugs and the like. 

Hospice Medications

Most medications administered to hospice patients are not intended to treat an illness, but rather to alleviate discomfort. Some of the more common drugs are morphine (used to relieve pain and to steady breathing), Lorazepam (used to treat anxiety and agitation), Levsin (used as a drying agent to prevent the build-up of excess fluid in the back of the throat), and Haldol (used to treat agitation and nausea). Many other medications may be used for similar purposes, depending on the needs and sensitivities of the patient. 

No two patients are the same, making careful dosage considerations crucial for quality hospice care. Doctors, specialized hospice nurses, and any other caretakers must work together to ensure optimum care for hospice patients. 

Related Articles

• Types of Physical Discomfort Among the Dying
• Does Morphine Hasten the Dying Process?
• Pain Management in Palliative Care
• Loss of Appetite When Dying Explained

Spending one’s last days at home used to be a prevalent situation. Unfortunately, since the 1960s, hospital ICUs have become the most commonplace for people to spend their final moments. However, with advances in technologies and attitudes, the “luxury” of being able to receive hospice or palliative care at home is once again returning to the mainstream. While this is good news for hospice patients and those closest to them, a proper home hospice setup is a crucial aspect of delivering quality care. 

Determining the Best Course of Action

Before home hospice can take place, the arrangement needs to be approved and reviewed by attending medical professionals. If the patient has intense or unique care needs, home hospice or palliative care may not be possible. Not only will the attending medical professionals need to sign off on a home hospice arrangement, but they will also be integral to developing the best home care plan possible.

Limiting Hazards for Patients & Caregivers Alike

To provide the patient with the most excellent care, caregivers must be given the most optimal workplace possible. Though patient comfort is of the utmost concern with a home hospice or palliative care setup, providing this comfort will be more difficult for caregivers if a home hospice space is unnecessarily cluttered. This means that all unnecessary tripping hazards (rugs, items, etc.) or inhibitive accessories (unnecessary furniture, hanging lights, etc.) must be removed from the care spaces. 

Preparing the Bedroom

The bedroom will be one of the most crucial sections of the house for optimal patient care. As mobility declines, more and more attention will be administered from this space. Because of the limited mobility as well as confined space, a typical hospital bed is recommended. If the bedroom space is not ample enough to accommodate a hospital bed and all of the necessary care equipment, a larger room may be selected as the place where the bed will reside. Some options may include a den, front room, or even a living room.

Bathroom Safety

For the safety and comfort of patients, easy access to the home’s bathroom is crucial. Once in the bathroom, new hazards emerge. Because more slips and falls occur in the bathroom than anywhere else in the house of someone with unique needs, non-slip mats, handrails, heightened toilet seats, and shower chairs must be installed. Any bathroom used by the patient should be able to accommodate all of the medical accessories and needs. 

Keeping Home Cozy

There’s little use in allowing a hospice or palliative care patient access to home care if their home doesn’t feel as such. To keep the home feeling like a home rather than a hospital room in their house, comfort-inducing touches are essential. A patient’s favorite activities should be easily accessible—this includes access to games, books, pictures, keepsakes, television, a computer, telephone, and the like. When possible, their own favorite pillows, blankets, and furniture should be utilized when their need arises. 

Accessible Care Plans

There’s a good chance that multiple caretakers will be tasked with caring for an at-home hospice or palliative care patient. These various caretakers will need to work in sync with one another to provide consistent care. To facilitate this partnership, a care folder or plan should exist within the home in an accessible place. Ideally, this place within the house should be dedicated to managing the patient’s at-home care. The folder in this area should contain documents that outline the patient’s needs, emergency contact information, medication schedules, meal plans, and anything else needed to ensure patient comfort. 

The goal of home hospice and palliative care is not a hospital room disguised as a home, but a home that can still accommodate all of a patient’s medical needs. 

All of this possible from the friendly professionals serving Greater Tulsa, OK at Cura HPC Hospice & Palliative Care.

"Children Don't Grieve." 

Even among specialists, there was a past misconception that children do not grieve the death of a grandparent, parent, sibling, relative, or friend. This long-held fallacy was based on the idea that children are not intellectually and emotionally developed enough to fathom a concept like death. This idea has been handed down and created a significant dissonance with the truth—children grieve.

The "D" Word

When a family or friend group experiences a death, there is a tendency to soften the blow for children. This softening may exist in the form of altered language. Parents and caregivers may feel tempted only to use words such as "lost," "passed on," or "gone to heaven" in regards to death with children. Though these are sweet sentiments, using them exclusively can confuse children. They may not understand what "Grandpa passed away" means or "Daddy is in heaven now." Telling a child that "Grandpa died" or "Mommy is sad because Aunt Carol died last night" can help them begin to understand the finality of death and that their loved one is not coming back.

Include Them

Some families will attempt to shield children from death by excluding them from memorial rituals. Some may feel that keeping children away from a funeral or cemetery rituals for a close loved one who has died is protecting them for emotional trauma. While everyone should use their best discretion, including children in these rituals can help them process the finality of this loss. Beginning to understand that this beloved family member or friend is gone and not coming back can help children properly grieve and gain a sense of closure. 

How Kids Show Grief

The death of a loved one is an immensely confusing time for anyone, but even more so for a child. Children may not understand the thoughts and emotions they are beginning to experience—sometimes for the first time. To help children process and understand these emotions, parents and caregivers need to be able to identify the physical signs of grief in children. 

Fear Grins & Laughter

As bizarre as it sounds, upon hearing the news that a loved one has died, some children may smile or even laugh. While seemingly disrespectful, this is often a result of emotional overload. This behavior may also be the child's subconscious wanting to offset negative feelings and want gloomier times to return to normal.

Loss of Sleep or Appetite

One of the main symptoms of grief or mourning in children is a lack of sleep or appetite. Children may begin to ruminate over a variety of ideas and emotions once the activity of the day has settled and the lights are turned off. For this reason, it is a good idea for parents or caregivers to check on children an hour or so after they have been put to bed. During these hours of the night, a grieving child may feel anxious or alone with their thoughts. If a child seems overly tired at the breakfast table or lethargic during the day, this may be the sign of inadequate sleep the night before.

Withdrawing From Activities They Enjoy

Another symptom of grief in children is withdrawing from activities they typically enjoy. In many instances, grieving children may prefer to be alone—even away from friends and loved ones. While their space should be respected during these times, they should also be assured that they are not alone—that a loved one is nearby to talk about anything they have on their minds. 

How to Help a Grieving Child

It's easy to feel powerless to help or understand a grieving child. Children may not be able to express themselves adequately. Despite this difficulty, there are numerous ways you can assist a grieving kid. 

Grieving Isn't an Illness.

Many are tempted to treat grief like a sickness—a problem in need of fixing. In reality, grief is a process to be navigated. While relief from grief sounds nice, it's an integral part of the healing process. When the grieving process is inhibited, this can result in negative mental or emotional consequences down the road. Instead of just trying to get kids to "snap out of it", "pull yourself together," or "be a big girl/boy," it is crucial to allow children to grieve adequately.

Be There

One of the most beneficial things you can do for a grieving child is to listen to them. While you can offer your advice and answer their questions to the best of your ability, they likely feel vulnerable and alone. Listening to them will help them feel heard, taken seriously, and less lonely. Being present can also mean helping them get back to a semblance of normalcy with activities they enjoy. It is important not to push these activities on them, but to offer them as a gentle distraction. 

Involve Them in the Dying Process

If the child's loved one has not yet passed, letting them spend time with the dying individual in hospice care can help them understand what is happening. Not only is this a great way to help children understand the finality of the situation, it can also enhance the life of the hospice patient. Most hospice providers are happy to help facilitate such an arrangement. 

Palliative Care & Hospice Serving the Greater Tulsa, OK Area

If you or a loved one are searching for quality hospice or palliative care services in the Greater Tulsa, OK area, you're invited to meet the caring professionals from Cura HPC.