Main image courtesy of New Concept Care and Nursing.

As a society, we have trouble discussing death and dying. This stems from the fact that many people have a hard time accepting their own mortality. Instead of talking about death regularly like the natural process it is, we tend to avoid the subject, or distance ourselves from it by using metaphors. As a hospice nurse or volunteer, you know that hospice care is an important part of the end stages of a patient’s life. 

However, this does not mean that caring for a patient at the end of their life is easy. Many times staff have a hard time dealing with the complex emotions that grief brings, and find themselves struggling to cope.

Mariposa Training has courses specifically geared towards understanding how to better train staff to understand their own feelings towards death, so they can provide the care that hospice patients need.

In this article, we’re going to cover topics relating to:

• What hospice care is and why it’s important
• How hospice care helps both patients and families
• The essential role of hospices nurses and volunteers

What is hospice care and why is it important?

Offering specialized care for patients at the end of their life provides many benefits

Hospice care is defined as the type of care that is given to those who are at the end stage of life or have been diagnosed with a terminal illness. It focuses on managing the symptoms of the illness or the end of life rather than trying to cure the condition to extend the patient’s life. Hospice care is unique from curative care because it seeks to keep the patient comfortable so that they can experience the remainder of their life in dignity and less pain. In addition, hospice care also works to support both the patient and family members during this difficult time and can provide psychological, spiritual, and emotional care. The hospice team is dedicated to helping the patient come to terms and understand that death is just the final stage of life. 

Hospice care is an approach to caring for an individual, so a patient can get access to care either in their home, a hospital, long term care facility, or in a specially designated hospice center. Many times this type of care is not started soon enough. This means there is not sufficient time for a patient to get the full benefits of having a dedicated team who is there to help them (and their families) transition through the stages of grief—and accept that the end of life is near. 

Hospice teams are typically composed of medical professionals such as doctors and nurses, skilled volunteers, social workers, and spiritual advisors. They are all working together to ensure the patient is comfortable and that they are able to spend their last days among friends and family, while they are as comfortable and pain free as they can be. 

How can hospice care help patients?

Why is it important to talk about hospice care with patients?

When a patient (or the individual with power of attorney to make decisions for the patient) determines that they would like to receive hospice care, their team will then decide what is the best place for this type of care. One of the best things about hospice care is that it can provide many benefits to those residents who are at the end of life stage.

1. Specialized care

The care of individuals who are shifting towards the type of care that hospice can provide are always going to do so with a team of experts behind them. Regardless of where the patient is (in home, care center, etc.) the hospice team is able to take the lead when it comes to ensuring the comfort of the patient. They work to keep the stress on the family a minimum and offer support emotionally. 

Hospice vs. palliative care

Hospice care and palliative care can be given to a patient separately, or in conjunction with each other. As we’ve discussed, hospice care focuses on treating symptoms and supporting a patient at the end of their lives. Palliative care (also called comfort care or supportive care) can be given alongside hospice care, but it can also be a part of a curative plan. Like hospice care, palliative care aims to treat the symptoms of what is affecting the patient, and make them as comfortable and stress-free as possible.

Palliative care is usually tied in with end of life because it is helpful to keep the patient as alert as possible so they can enjoy the time they spend with their family. Palliative care also works to involve the family members, and helps them learn to come to terms with grief. 

2. Different levels of care

Hospice care operates on four different levels, depending on what the needs of the patient are. You can receive:

• Routine home care. This is the type of care where hospice team members set the patient up in their home according to their wishes. They’ll be available to monitor and visit them as needed. 

• General inpatient. If the patient’s symptoms cannot be managed at home, hospice care can be provided in a hospital environment. 

• Continuous care. If the patient is at home but requires continuous monitoring, hospice can ensure there is someone available to be with the patient at all times until they can resume normal or routine home care.

• Respite care. If the primary caregivers of the patient are the family, the hospice team can offer respite care to give them a break to recharge. The hospice team will provide continuous care to the patient so the family members are able to take some time away and avoid burnout.

3. Grief support

One of the most difficult aspects of hospice care is grief support. Both the patient and the family members may experience the different stages of grief. Hospice teams can help families deal with the anticipation of grief, and help them understand that grieving is a normal process, and it looks different for everyone. The hospice team can also help the patient prepare and accept that death is the last stage of life. Both patients and families will experience different stages of the grief cycle. 

Openly acknowledging this process is very helpful, and can help guide them through the normal grief cycle and prevent an onset of complicated grief. The normal grief stages typically include:

• Denial. Death is difficult to accept, and it can be hard to discuss end of life to the families of patients. They may not want to accept that their loved one is ready and wants to start hospice care. Denying the reality doesn’t change the situation, but it seems to help lessen the blow. 

• Rage. Both patients and family members can be upset about imminent death. They may think that it isn’t fair that their loved one is facing death. A patient may also feel this way and are angry that they won’t get to spend any more time alive and with their family.

• Bargaining. Families and even staff who care for end of life patients often think that if they just care for the person more, it may help them live longer. A common theme is “if only” when it comes to keeping the person alive. Bargaining gives them hope that there is something they can do to help the patient have more time.

• Depression. When the reality of mortality sinks in, it can cause patients and their families to feel incredibly sad. The truth of eventual death is very painful, and can cause sorrow and depression.

• Acceptance. Once the reality of death has sunk in, a patient can finally accept it and understand that it will be okay. Their family can also do the same, and treasure the time that they do have left. Acceptance only comes after going through intense emotions to finally understand the inevitably of it all. 

Complicated grief occurs when the feelings towards death are not expressed. This type of grief starts to interfere with other aspects of life, and can lead to worsening depressive symptoms, withdrawal, and guilt. 

4. Individualized plans

Each patient who is in hospice also has access to assistance with advance planning. Whether they need to make directives, a living will, a last will and testament, or need to arrange their financial matters, a hospice care team can guide them. 

5. Peace of mind

When a patient is undergoing hospice care at the end of life, it can give them and their families peace of mind knowing they are safe and comfortable. When the directive of care is the comfort of the patient, it allows both patients and families to begin to acknowledge and accept death. With the help of the dedicated hospice team, the last months or weeks of a patient’s life can be spent without an overwhelming amount of stress. 

Hospice care is important because it addresses the physical, emotional, and spiritual needs of the patient and their families. It gives them a chance to understand and prepare for the end of life. Support during this difficult time is essential, and allows patients the time they need to come to terms, accept, and let go. 

Why your role as a hospice nurse or volunteer is essential 

Staff members have an important role to play 

Hospice nurses and volunteers are an essential part of the care team. They offer their expertise to both the patients they care for and their families. Nurses and volunteers are on the front lines of care, and depending on the patient, may be expected to not only deliver medical care, but emotional care as well. Sometimes patients or family members have a difficult time accepting the anticipated loss. As a hospice nurse or volunteer, it may be helpful to understand and accept your own feelings towards death, so you can be a better supportive listener to both the patient and their family.

It’s essential to make sure the patient’s physical needs are met, and that they’re comfortable. If they want to talk to you, try and listen. Sometimes it’s helpful for people to talk to someone about something they’re scared of, such as death. Having a listener allows them to put into words what they’re thinking, which can help them with acceptance. Offer support to the family, and encourage them to seek out other guidance from professionals if necessary. 

One of the most overlooked roles of hospice nurses and volunteers is to help their fellow co-workers through this time. If staff have a relationship with a patient who is going through hospice care, it can be difficult. Staff members are attached to and form bonds with those they care for, making death difficult for them as well. It can be exhausting caring for a patient who is dying, and staff can exhibit angry or sad emotions at this time. 

Educating and training nurses and volunteers on how to learn how to say goodbye, and recognize that the emotions they’re feeling are due to grief, is an important aspect of acceptance. It is helpful to speak about what’s going on, and to actively encourage staff to discuss their feelings. This is one of the best ways to acknowledge and work through grief. 

Hospice is an important way to offer care to patients who are in their last stages of life. Hospice nurses and volunteers are a part of a team that cares for patients and their families, but they also need to learn to care for themselves and their co-workers. Discussing emotions and finding ways to accept death are healthy ways of grieving. Training staff to understand their feelings are valid and there are people there to help them work through these difficult emotions is a good way to ensure they’re working towards acceptance.

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