Hospice Death & Dying- Hospice Nursing

What is it like when a patient dies on hospice? What happens when someone dies at an Inpatient Hospice Facility?

Hospice is associated with death much more than any other nursing field, so it is natural for people to wonder what it is like to witness or experience death as a hospice nurse.

So, I thought I would run through what is involved in a hospice death- the signs and symptoms leading up to the death and then a quick review of post-mortem care.

This information is useful to hospice nurses and hospice caregivers, as well as family and friends who have a loved one on hospice services. This information is from the perspective of a hospice nurse, so information regarding the responsibilities of the Registered Nurse will also be explored.

As a patient gets closer to death, there is a myriad of symptoms the patient may experience. Every individual will have a unique dying process and no two people are alike when on the journey to death.

In hospice, there are two terms that we use to describe patients when we notice a severe decline and start to suspect the patient is close to death.

Transitioning & Active

Active: Hospice nurses will say a patient is “active” if that patient is actively dying. This means that the hospice nursing staff feels as though the patient will likely die within hours to a couple of days. The patient is unresponsive to tactile and verbal stimuli and mostly in a coma like state.

Transitioning: Hospice nurses will say a patient is “transitioning” if the patient is severely declining and on their way to the “active” state. Typically, there is a sudden onset of symptoms such as confusion, delirium, or agitation that will make us think that a patient is transitioning. Often times these patients may still be somewhat responsive and may even have periods of lucidness. As they continue to decline and transition, however, they will become unresponsive.

Common Signs & Symptoms

Some common symptoms that can arise as a patient gets closer to death are as follows:

• Restlessness
• Agitation
• Shortness of breath
• Decreased blood pressure
• Oral secretions/ gurgling
• Unresponsiveness
• Apnea
• Decreased respiratory rate
• Mottling
• Cold extremities
• Bowel and bladder incontinence

Patients may also experience what is known as terminal restlessness. This is similar to the other types of restlessness that is seen in other patients, it’s just named “terminal restlessness” because it occurs at the end of life. The patients can be extremely agitated and often need management with medications such as lorazepam or haloperidol.

Some patients will also experience what is referred to as the “death rattle”. This is a gurgling sound that can be heard is due to a build up of oral secretions in the back of the throat. When a patient breathes in and out, the air passes through the secretions causing the unsettling “rattle”. This is not harmful or painful for the patient, however family members may find it disturbing. Levsin is a medication that can be used to help this occurrence, as well as utilizing oropharyngeal suction.

Many patients will experience a change in their respiratory status when they are nearing death. They may experience what is referred to as mandibular breathing, apnea, bradypnea, shortness of breath, etc. A sudden change in a patient’s respiratory status could indicate imminent death.

Patient’s may also experience circulatory changes which can cause mottling and cold extremities. This is due to a decrease in blood flow to the affected areas.

Family Education

It is often difficult to know when a patient’s death is imminent, but the patient’s family will have questions about what to expect. During this time it is very important to keep an open line of communication with the family.

Many family members will require continued education and reinforcement, so be sure to check in with them frequently to ensure everyone is on the same page.

Time of Death

Once it is assumed that a patient has passed, a registered nurse will auscultate the apical heart rate for a full 60 seconds. If there is no heartbeat during the 60 seconds of auscultation, then the nurse can pronounce the patient. The nurse will need to take note of the date and time of the pronouncement of the death for documentation purposes.

If there is family present at the bedside, then they are given the opportunity to spend time with the patient. If there is no family at the bedside, then the designated family contact is notified of the patient’s death. They are then allowed the option to come up to the facility to visit the patient.

The facility I work at performs a “Rose Ceremony” for the family that is present when the patient passes. The ceremony includes one of the healthcare employees reciting a poem that our chaplain wrote called “The Rose”. We also use this time to say our thanks to the family and offer them our condolences. We also give a bereavement packet to the family that reviews the stages of grief and bereavement. The bereaved family is followed up with for a full year by hospice staff to ensure that their needs are being met during their grieving process.

Once the ceremony is completed, the family is allowed as much time with the family as they would like. Once they are ready, then the selected funeral home is notified. The family is allowed to stay until the funeral home comes or they can leave.

During this time, hospice staff with perform post-mortem care.

Post-Mortem Care

This involves tasks such as removing any soiled toileting items or soiled pieces of clothing. Wipes or a damp wash cloth can be used to remove excess oils or fluids off of the body.

Funeral homes typically want indwelling items such as Foley catheters, intravenous devices, chest tubes, etc. to remain in place. This is because there is often a release of bodily fluids at the end of life and during the transfer of the patient.

The body is then released to the funeral home and the patient is “discharged” from the hospice agency. The Registered Nurse then completes the required documentation.

The documentation will vary at each hospice agency, but it typically involves the following items

• Time of Death (TOD)
• Family and staff present at TOD
• Tasks performed at TOD
• Funeral Home
• Resolving the care plan

Conclusion

As mentioned, no two individuals will experience death in the same way. However, the signs and symptoms covered should give you an idea of what to look out for as death becomes imminent.

The hospice interdisciplinary team works together to support the patient and family during the dying process and works to bring peace in whatever way possible.

Please reach out if you have any questions.