Preparing for a Good Death: Topics to Cover with Hospice Patients and Their Families

Published on April 2, 2023

Updated on November 8, 2023

I have worked with countless terminally ill patients and their families. One of the most important aspects of 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 .

A Good Death

A “” is one that 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 important to cover the following topics:

  • Understanding the hospice philosophy of care: explain the goal of , which is to provide comfort and support to patients and their families during the end-of-life journey.
  • Discussing the patient's medical history: 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 what medications will be covered by the hospice provider.
  • Developing a care plan: work with the patient and their family to develop a care plan that meets their individual needs and preferences.
  • Review the patient's “medical treatment” preferences for death including CPR vs. DNR, comfort measures as well as providing education especially if the patient chooses FULL CODE. Always respect the patient and family wishes, but if they are FULL CODE, do plan to address the code status on a frequent basis even if it is just monitoring the status.
  • Addressing psychosocial needs: talk about 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 to help you ascertain how close the patient is to dying.

Post Admission Visit

After the admission visit, it's important to follow up with a post admission visit. 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 the patient's symptoms and make changes to their medication or care plan as needed.
  • Review any new medications including the comfort kit (sometimes referred to as an ).
  • Re-review the medications covered by hospice vs. what is not covered by hospice.
  • Review the proposed scheduled for each hospice team member coming to see 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 they may have.

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.
  • Educating the family and caregivers as to what to report to hospice in terms of critical changes of condition.
  • Educate the caregivers and family as to the dietary changes that will take place over the course of the illness leading to the loss of the gag reflex and 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 assess pain when the patient is no longer able to express themselves.
  • Review routine medications the patient is taking with the patient and family with ongoing discussions of when certain medications may be discontinued or otherwise modified.
  • Reviewing the care plan: regularly review the care plan to make sure it's still meeting the patient's needs.
  • Reinforce the need for caregivers to journal when they give what PRN medications, for what reason they were given 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 provide that along with asking them how often you should check back for that information to not come 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 they are still eligible for hospice care.
  • Update the care plan: make any necessary changes to the care plan based on the patient's current needs.
  • Educate the family on the changes that have been documented to date.

Last Two Weeks of Life

As the patient approaches the end of their life, it's important to:

  • Prepare the family: discuss what to expect in the last days and hours of life. Do go over what the death visit will look like as part of what to expect.
  • Review with families and caregivers their understanding on how to assess for pain and in nonverbal patients or patients that can no longer indicate for themselves they are uncomfortable.
  • Review the comfort medications, their intended use, when to use them, what dose and frequency and the journaling of their use.
  • Re-review the patient's medications with consideration given to what routine medications are no longer beneficial.
  • Consider providing a schedule of what comfort medications to give with routine frequency as well as when to give PRN doses of which medication at what frequency.
  • Provide comfort measures: focus on keeping the patient comfortable and managing any 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: offer spiritual support to the patient and their family, if desired.

Last Hours of Life

In the last hours of life, it's important 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 time of suspected death.
  • Support the family: offer emotional support to the family and answer any questions they may have.

Death Visit and After

After the patient has passed away, it's important 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 , I believe that 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 that our patients have a peaceful and dignified end-of-life experience.

Resources

The Importance of Caregiver Journaling

Reporting Changes of Condition to Hospice

Eldercare Locator: a nationwide service that connects older Americans and their caregivers with trustworthy local support resources

As an Amazon Associate, I earn from qualifying purchases. The amount generated from these “qualifying purchases” helps to maintain this site.

My Aging Parent Needs Help!: 7 Step Guide to Caregiving with No Regrets, More Compassion, and Going from Overwhelmed to Organized [Includes Tips for Caregiver Burnout]

Take Back Your Life: A Caregiver's Guide to Finding Freedom in the Midst of Overwhelm

The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself

Dear Caregiver, It's Your Life Too: 71 Self-Care Tips To Manage Stress, Avoid Burnout And Find Joy Again While Caring For A Loved One

Everything Happens for a Reason: And Other Lies I've Loved

The Art of Dying

Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying

Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)

Preparing the patient, family, and caregivers for a “Good Death”

Velocity of Changes in Condition as an Indicator of Approaching Death (often helpful to answer how soon? or when?)

The Dying Process and the End of Life

The Last Hours of Life

As an Amazon Associate, I earn from qualifying purchases. The amount generated from these “qualifying purchases” helps to maintain this site.

Gone from My Sight: The Dying Experience

The Eleventh Hour: A Caring Guideline for the Hours to Minutes Before Death

By Your Side , A Guide for Caring for the Dying at Home

Oh hi there 👋 It's nice to meet you.

Sign up to receive updates on new articles to your inbox.

The emails we will send you only deal with educational articles, not requests to buy a single thing! Read our privacy policy for more information.

Share your love