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All About Hospice: From A Hospice Nurse

Writer's picture: Emma ParsonsEmma Parsons

Written By Emma Parsons, BSN, RN





As our loved one’s diseases progress, it may become necessary to consider hospice or palliative care. As many of you know, choosing to place a loved one in hospice care is a very difficult decision. Many families frequently ask questions like: is my loved one really dying? Did we do everything we could? Are there any other options? What will hospice care be like? Can we still treat our loved one’s conditions while they’re under the care of a hospice team?


As a hospice nurse, I hope to answer some of these questions and help alleviate some common fears involved with making the decision to place a loved one in hospice care.


WHAT IS HOSPICE CARE LIKE? WHAT DOES THE HOSPICE TEAM DO FOR MY LOVED ONE?


Hospice care can be a light in a dark storm for many families experiencing the death of a loved one. Going through the experience by yourself can be extremely challenging, so having the support of a skilled team is very helpful for a multitude of reasons.


The hospice team is typically comprised of a physician, registered nurse, certified nursing assistant, social worker, and chaplain. Hospice teams focus on caring for the person’s physical, emotional, and spiritual needs as they undergo the dying journey. The greatest emphasis is placed on comfort, so if a person has any issue that is causing them pain or discomfort, the hospice team will do everything they can to fix it.


Hospice teams offer bereavement support for families as well as support with understanding the legal implications of what happens when someone dies. Often times, families will need assistance with getting their affairs in order, and hospice teams can help with this.



IS MY LOVED ONE APPROPRIATE FOR HOSPICE CARE? WHAT ARE THE CRITERIA?


Believe it or not, there are MANY qualifying criteria for placing a loved one on hospice or palliative care. Has your loved one recently lost weight? Progressive weight loss (usually over the course of three months) is a significant indicator of decline in condition, and therefore a qualifying criterion for hospice placement. Or, if your loved one has suddenly stopped eating or drinking, this can be an indicator that their condition is declining. Towards the end of life, people either drastically reduce their caloric intake or stop eating altogether. This is actually a very normal part of the dying process and can be due to a reduction in appetite, difficulty swallowing, or not having enough energy to eat or drink. Forcing someone to eat or drink when they are close to the end of life can cause major problems like aspiration pneumonia, an inability to breathe effectively due to secretions in the airway, and a worsening of edema (swelling in the arms/legs). This is why it is important for persons who have exhibited a significant reduction in appetite to consult their physician or hospice provider.


Another criterion that may qualify your loved one for hospice is a general decline in their overall condition or a worsening of any of their disease processes or disorders. If your loved one has been hospitalized frequently in the last six months, they may be eligible for hospice care. For example, if your loved one has chronic obstructive pulmonary disease (COPD) and has been hospitalized many times in the last six months due to a worsening of their condition (ie., pneumonia, increased requirements for oxygen) they have demonstrated a documented decline and therefore Medicare or another insurance provider may deem them appropriate for hospice care.


Some other criterion that may qualify your loved one for hospice are skin breakdown (pressure injuries due to an inability to move effectively), recurring infections (pneumonia is a common one), a deterioration in their ability to take care of themselves (eating, dressing, showering, toileting, walking), a significant change in their cognition, an increase in weakness or somnolence, or a physician actually telling a person they have less than six months to live.


For people with dementia, it can often be difficult to determine the exact moment when they become eligible for hospice because their condition is progressive and various stages can last months or even years. Typically, people with dementia become eligible for hospice when they also meet other criteria like significant weight loss, difficulty swallowing, incontinence, somnolence, an inability to communicate, a pneumonia or sepsis diagnosis, frequent hospitalizations, or an exacerbation of a co-occurring disorder like COPD, heart failure, or cancer.



WHAT HAPPENS TO MY LOVED ONE AS THEY ARE DYING?


Sometimes the dying process happens very quickly, over the course of hours or days, but sometimes the dying process can take weeks or even months. As the person progresses in their decline, they will typically experience a range of symptoms. One of the first things that happens as the body begins to slow down is the person will experience much more fatigue and drowsiness than usual. Things that used to be easy for them like eating and drinking can be a difficult task and can cause them to tire quickly. Drowsiness then can progress to detachment from reality, increasing weakness, and somnolence. Your loved one may spend a lot of time sleeping and not be as responsive to you as they once were. They may talk to people who are not there or say things that do not make sense. This is often a normal part of the dying process but can be very difficult for families to experience. As your loved one progresses through this stage, I recommend expressing feelings or reminiscing on cherished memories. Hearing is the last sense to go, so it is probable that your loved one can still hear you during this time. On the opposite end of the spectrum, your loved one may become very restless as they near the end of life.


Hospice care teams often call this stage, “terminal restlessness” because it is very common towards the end of life. Your loved one may exhibit agitation, fidgeting, crying out, or becoming withdrawn. There can be many underlying factors at play causing terminal restlessness, but some common ones are side effects from medications, emotions about dying, organ failure, or difficulty breathing. Your hospice team can recommend medications and other interventions that are very effective for terminal restlessness.


Another symptom that is often troubling for families as their loved one dies is shortness of breath. Although a normal part of the dying process, it can be challenging to witness so it is important to have a hospice care team in place to assist with this symptom. As the body begins to shut down, so does its drive to breathe. You may witness your loved one breathing rapidly or breathing in an abnormal pattern. You may also notice excess secretions in their airway or a gurgling sound when they breathe. Hospice teams have an arsenal of tools to help alleviate the discomfort associated with this symptom including oxygen, non-pharmacological interventions, and various medications. Please notify your hospice team immediately if you notice a change in your loved one’s breathing.


WHAT MEDICATIONS ARE COMMON IN HOSPICE CARE?


There are several medications that are commonly used in hospice care. Many families are not aware that their loved one can typically continue their normal medications while on hospice. The hospice provider will add or remove medications based the individual‘s unique situation. For example, if the person exhibits difficulty swallowing, the provider may remove oral medications or request liquid formations of the medications where appropriate. In addition to the person’s regular medications, hospice providers may also prescribe additional things based on the person’s symptoms.


One of the most commonly prescribed medications for hospice patients is morphine. Often times, when families hear that their loved one has been placed on morphine, they are concerned. Is my loved one really in pain? Morphine actually can be used for symptoms other than pain. One of the primary reasons why a hospice patient may receive morphine is for shortness of breath. Morphine causes something called vasodilation which means dilation of blood vessels in the body. It is believed that morphine dilates the vessels in the lungs, leading to decreased air hunger and a decrease in the effort it takes to breath. It also helps with the uncomfortable sensation involved with shortness of breath and eases the burden associated with the work of breathing. Morphine can also increase endorphins and in turn decrease anxiety that can be associated with dying.


Anxiety is very common as a person nears death, and, as previously discussed, terminal restlessness can occur. Benzodiazepines and sedatives help alleviate anxiousness, fear, and restlessness by impacting chemical messengers in the brain to slow down the central nervous system. If you notice that your loved one is anxious, make sure to inform your hospice team so they can consider interventions.


These are some of the most common medications utilized in hospice care, but there are many more that your provider can consider for your loved one’s unique situation.



A NOTE ABOUT GRIEF


Of all the things discussed in this blog, this section is by far the most important. Whenever a family is about to experience or has experienced a loss, grief is often present. Please understand that grief is a very normal reaction to a loss, and each individual experiences grief differently. It is so important to have the support you need in place before your loved one dies if possible. Hospice teams are very skilled in bereavement counseling and are not only an integral component for caring for your loved one, but also for supporting the family unit during the loss. Prioritize caring for yourself during your loved one’s dying process, no matter how difficult it may be. Your loved one wants you to be comfortable during this time just like you want them to be comfortable and this cannot be accomplished if you are not eating, showering, or taking care of your own needs.


It is also normal during this time to experience a range of emotions, including anger or resentment at the person who is dying. Feelings of guilt are also very common. Make sure not to judge yourself for the feelings that you are experiencing as they are all a very normal reaction to the loss of a loved one. Please talk to someone you trust about your feelings, no matter how crazy they might seem. I guarantee if you are vulnerable enough to open up, someone will also express that they have felt similarly.


I hope this blog has helped to shed some light about hospice care and the dying process. Although very difficult, a hospice team can help ease the transition from this life to the next not only for the person who is dying but also for their family. I send peace and light to anyone experiencing loss today.


**Please note, this should not be considered medical advice. This blog is based on the opinion of the author only. Please seek the medical direction of your loved one’s physician to make decisions related to hospice care.**

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