Uncertainties and Fears Entering Hospice: What to Expect!

How comfortable and confident are you as a healthcare professional in providing support and end-of-life answers for your patients in Hospice?

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  • Specializes in Experience and degree in behavior, DD and Dementia. Has 52 years experience.

When first admitting a patient and their family into the hospice care experience, it is important to know that they are fearful of the unknown. Some view it as a death sentence and want to know what to expect. Common questions are, "How long do I have to live?" "Will I have a great deal of pain?" "What can I expect?" Another thing to consider is how comfortable and confident the healthcare professional is in providing support and answers, whether that be an RN, a CNA, a social worker, a chaplain, a volunteer, the physician, or even in some cases, the patient's own family.

Although all these uncertainties exist, the primary goal of the hospice team is to support and provide comfort to the patient and family; spiritually, physically, emotionally, and with whatever other worries or concerns they may have preparing for the end of life. According to Dr. Atul Gawande (surgeon, writer, and public health researcher):

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The goal is not a good death. The goal is a good life - all the way to the end.

So, what are the expectations, and when are the appropriate times to discuss and review them? Patients and families need to be told honest expectations if they are open to receiving them. Sometimes as a nurse or member of a hospice team, it is not a rewarding situation, such as when the patient and/or family want everything done to prolong life when there is, in essence, no available cure. Sometimes this denial leads to prolonged, painful treatments and surgeries. While attempting to be as supportive of the patient and/or family's wishes, it is sometimes a very painful situation for the hospice team to be in a helpless situation.

Often, families, nurses and even some physicians may question dosages, worrying that increasing pain medication may lead to dependency or addiction. After all, we have been taught that opioid use is extremely dangerous.

The hospice model falls under an entirely different philosophy, however. It is to provide end-of-life comfort and promote the best quality of life. In most situations, pain is managed to be well-controlled, allowing the patient to live out their last days in a pain-free or pain-reduced environment. Near the end of life, we frequently see the patient become unresponsive. Sometimes, it is felt that with morphine dosages being increased, respirations are depressed. Again, here our goal is to reduce labored, agonal respirations and to prevent the patient from struggling to breathe. For some pain and cancers, even Methadone has been a good drug of choice for pain relief. Methadone is functional to treat pain by altering the way the brain and nervous system react to pain.

Sometimes, the doctors are at a standstill as they are taught to preserve life and heal. Again, this is difficult for them, and they frequently need support from the nurses and the rest of the team.

Nurses often feel a need to be more recognized and rewarded. It has been pointed out several times that it takes special people to participate in this dying process.

Just as OB and delivery nurses share in the intimacy of the start of life, so does the hospice team share an intimate time of helping people through this transition. Sometimes there is listening, holding hands, praying with them, answering questions, and helping them prepare to get their affairs in order. After the death, there is the element of being there for the loved ones, handling the body with dignity and respect, and helping the family say goodbye.

As an RN, hospice has touched my life in so many ways. It has also had a positive experience when my own parents needed it. Also, the afterlife bereavement support was phenomenal. I have learned so much through my hospice experience, as it has touched my life and my family's life.

Knowing end-of-life care is not for everyone; some nurses may not be comfortable with it. That is certainly a choice that all nurses must make a decision for themselves. Many provide so much goodness in other ways sustaining life that we are forever grateful to them as well.

One of the hospices which I was associated with provided honor and recognition for our veterans, which was extremely rewarding.

Through the years, I have been able to help family and friends through their difficult times due to my hospice work.

In closing, I am sincerely grateful for the opportunity to share this part of my life with so many clients as well as other team members. They have truly touched my life in so many ways; I thank God for that.


References/Resources

Goodreads: Atul Gawande, MD, MPH

MedlinePlus: Drugs

Vicki Lyon R.N. B.A. Have been an RN since 1971, participating in care for Developmentally Disabled as well as Behavioral Studies. I have had over fifteen years of Hospice and Home Health experience.

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