I have worked with countless terminally ill patients and their families. One of the most important aspects of hospice care is ensuring that the patient and their loved ones are prepared for the end of life. In this article, I will cover the topics that hospice nurses should discuss with patients and caregivers to ensure a good death.
A Good Death
A “good death” is free from avoidable distress and suffering for the patient, their family, and their caregivers. It is a death that is in general accord with the patient's and family's preferences.
Admission Visit
During the admission visit, it's vital to cover the following topics:
Understanding the hospice philosophy of care: explain the goal of hospice care: providing comfort and support to patients and their families during the end-of-life journey.
Discussing the patient's medical history: review the patient's medical history to understand their current condition, including any symptoms or pain they are experiencing.
Reviewing medications: Discuss the patient's current medications and any potential interactions or side effects. Also, review what drugs the hospice provider will cover.
Developing a care plan: work with the patient and their family to develop a care plan that meets their needs and preferences.
Review the patient's “medical treatment” preferences for death, including CPR vs. DNR, comfort measures, and education, especially if the patient chooses FULL CODE. Always respect the patient and family's wishes, but if they are FULL CODE, plan to address the code status frequently, even if it is just monitoring the status.
Addressing psychosocial needs: discuss the emotional and social support the patient and their family may need during this time.
As the admitting nurse, ask questions while educating to gauge the velocity of changes in condition to help you ascertain how close the patient is to dying.
Post Admission Visit
After the admission visit, following up with a post-admission visit is essential. During this visit, you should:
Review the care plan: make sure the care plan is being implemented and make any necessary adjustments.
Assess the patient's symptoms: evaluate them and change their medication or care plan as needed.
Review any new medications, including the comfort kit (sometimes called an E-Kit).
Re-review the medications covered by hospice vs. what is not covered by hospice.
Review the proposed scheduled visit frequency for each hospice team member visiting the patient.
Reinforce 24×7 support, and along with specific situations, the family/caregivers should call hospice.
Address any concerns: listen to the patient and their family and address any concerns.
Weeks that Follow
As the weeks go by, there are several topics to cover:
Managing symptoms: work with the patient and their family to manage any symptoms or pain the patient is experiencing.
Educate the caregivers and family about the dietary changes that will occur throughout the illness, leading to the loss of the gag reflex and the inability to eat or drink.
Educate the family members on how to assess pain, especially if the patient has dementia or any cognitive issue, as well as how to determine pain when the patient is no longer able to express themselves.
Review routine medications the patient takes with the patient and family with ongoing discussions of when certain medications may be discontinued or modified.
Reviewing the care plan: regularly review it to ensure it meets the patient's needs.
Reinforce the need for caregivers to journal when they give what PRN medications they were given, for what reason, and the outcome, along with what types of decline they should be journaling.
If the family did not provide funeral home information on admission, encourage the family to give that and ask them how often you should check back for that information to avoid coming across as nagging.
Addressing psychosocial needs: continue to provide emotional and social support to the patient and their family.
As you get closer to the recertification visit, provide education on the components of the visit and how the journaling helps the team maintain service if the patient continues to be eligible.
Recertification Visit
During the recertification visit, you should:
Review the patient's progress, assess the patient's condition, and determine if the patient is still eligible for hospice care.
Update the care plan: Based on the patient's current needs, make any necessary changes to the care plan.
Educate the family on the changes that have been documented to date.
The Last Two Weeks of Life
As the patient approaches the end of their life, it's essential to:
Prepare the family: discuss what to expect in life's last days and hours. Do go over what the death visit will look like as part of what to expect.
Review with families and caregivers their understanding of assessing pain and discomfort in nonverbal patients or patients who can no longer indicate discomfort.
Review the comfort medications, their intended use, when, what dose, and frequency to use them, and the journaling of their use.
Re-review the patient's medications, considering what routine medications are no longer beneficial.
Consider providing a schedule of what comfort medications to give with routine frequency and when to give PRN doses of which medication at what frequency.
Provide comfort measures: focus on keeping the patient comfortable and managing symptoms or pain.
Double-check that you have the funeral home information.
If the patient is not DNR, have one final discussion with the power of attorney/family as to how the natural dying process is interrupted with CPR and how this can promote suffering. In the end, respect their choices.
Address spiritual needs: If desired, offer spiritual support to the patient and their family.
The Last Hours of Life
In the last hours of life, it's essential to:
Monitor the patient: regularly check on the patient and provide comfort measures as needed.
Rereview what the last breath looks and sounds like and reinforce calling hospice at the time of suspected death.
Support the family: offer emotional support and answer any questions.
Death Visit and After
After the patient has passed away, it's essential to:
Provide emotional support: offer comfort and support to the family during this challenging time.
Discuss next steps: explain what will happen next, such as funeral arrangements or organ donation.
Preparing for a good death is an ongoing process that involves addressing physical, emotional, and spiritual needs throughout the hospice journey. As a hospice nurse, providing comfort and support to patients and their families is one of the most important things we can do. By addressing these topics and providing compassionate care, we can help ensure our patients have a peaceful and dignified end-of-life experience.
