Nurses need to plan with the care team to ensure the person’s comfort is addressed all the way through to death. When a person’s PPS (Palliative Performance Scale) declines toward 30%, it is appropriate to request the following five changes to medical orders by consulting with the physician or nurse practitioner (NP). Because the person’s condition can change suddenly and it is difficult to predict when death will occur, ensuring the person’s comfort in their last days and hours will need these 5 orders requested early on. This will provide sufficient time for medications and supplies to be ordered and delivered so that they are easily available for the care team to administer.

Order 1 — Request to discontinue medication

Assess the medications the person is receiving and request the order to discontinue any medications that may not be effective during the last days and hours. For example, there may be medications that the person is no longer able to take because of difficulty with swallowing. Or medications that are not essential at end-of-life. For example, medications to manage chronic conditions such as Type II diabetes or high blood pressure. It is also worth considering a request to discontinue routine observations that will not benefit the person at the end of life, such as blood pressure checks.

Order 2 — Request dose increases for current medications

A person’s symptoms can change quickly and without warning in the last days and hours. Requesting increased doses for current medications will enable nurses to respond quickly if or when symptoms increase. With a prior approved request for a dose increase, the person will be kept comfortable and not have to wait for the nurse to contact the physician or NP to obtain approval for a medication dose change.

Order 3 — Request medications for common symptoms of dying

Pain, difficulty breathing, confusion or restlessness and respiratory congestion commonly occur with dying and may appear suddenly at any time within the last days and hours. Even if the person is not experiencing these symptoms, requesting orders for medications to manage these symptoms will ensure medications are available if the symptoms appear.

Secondly, make sure the medications are available 24/7 and physically onsite, whether in the community, long-term care or acute care. No one should die in distress or discomfort because a physician could not be reached, the pharmacy was closed, or the medications were in a different location.

Order 4 — Request medication route changes

As a person enters their last days, they will experience increased difficulty with swallowing and will eventually be unable to swallow. Therefore, medications that were administered orally will need to be administered using a different route. Request the route change from the physician or NP in advance and, like Order 3, ensure that the new medication and supplies for administering the medication subcutaneously are available, on-site, whether in the community, long-term care or acute care.

Order 5 — Plan for urinary incontinence

Bladder control decreases as a person is dying. There are different ways to manage incontinence depending on the person’s preferences and comfort. One way is to request a urinary catheter if this is acceptable for the person. Some people may prefer using bed pads and adult incontinence wear, despite the physical care and movement required to change the absorbency products.

George’s Experiences in his Last Weeks, Days and Hours

The following relates to George’s experience with dying and is shared with the permission of his family[1]. As you read through George’s experience, note the careful planning and extensive communication that took place before George was transferred home. Also, note the timing for requesting changes to medical orders. For a remote or rural location, change order requests will need to be communicated earlier in the dying process than for a person in an urban location. Communicating these requests early will ensure there is sufficient time available for the medications and other supplies to be made available 24/7.

George is a First Nations person and lives in a rural First Nations community on an island, approximately one hour away from a community with a pharmacy and hospital. George was in the hospital when he was told that he had only a matter of weeks to live. The care team asked him where he would like to be for the remaining time, and where he would like to die. George wanted to return home to be with his people as he died.

In George’s community, the community nurses prepared for George’s return as quickly as possible. They talked with the palliative care nurse consultant from the geographic health authority to seek their support and advice regarding what George might need to support him on his journey of dying. This was the first death occurring in their community for many years and as such, the care team wanted to be prepared to provide the best care. They wanted to make sure they had the equipment, education, and medications that would be required. Equipment was ordered to support George in his journey.

The family, community nurse and community care workers met with the palliative care physician (located approximately 6 hours away by car) by phone to discuss George’s history, current needs, and anticipated needs. They discussed medical orders that might be needed to ensure a peaceful death, especially if symptoms increased or if new symptoms arose. Together they finalized the care plan, and the physician wrote the necessary medical orders. The medical orders were sent immediately to the local pharmacy, and the pharmacist was informed of the care plan.

The palliative care nurse consultant suggested additional supplies that might be needed to change medication administration to a subcutaneous route, and other supplies that might be helpful to have on hand, such as a urinary catheter in the event that bladder incontinence or retention became an issue. The palliative care nurse consultant arranged for supplies from the health authority to be sent to the community.

Within a short time, everything was in place, and George was transferred home. His family, the community nurse and the community care workers from his band provided daily care. When symptoms changed or questions arose, the nurses communicated with the palliative care nurse consultant and or the palliative care physician (from the geographic health authority). Although these individuals were geographically remote from George’s community, they were readily available by phone or video call to answer questions, provide guidance and change orders as needed.

As George settled into his home, the nurses, family and community health workers listened to and discussed George’s preferences regarding care plans with him. Together with the community elders, they discussed protocols and traditions to follow before, during and following death. This included legal requirements from the health authority regarding the pronouncement of death and the details of caring for and transporting the body.

In George’s last weeks and days, the family, the nurses, and the community health workers provided care, remembering his goal to be as comfortable as possible. As George’s care needs increased, they increased the hours of care provided by the community health worker and nurses. When George began having difficulty with swallowing, they changed his medication route to subcutaneous. When George appeared to be uncomfortable, his dose of pain medication was increased. And when he became confused, agitated, restless and unable to sleep, they began medication to help with delirium. Family surrounded and companioned George day and night and were present when he died.

Following George’s death, community and traditional protocols were followed. The community nurse pronounced his death and notified those who needed to know, as directed. His body remained in the community according to traditional protocol. George was buried by his family in the community graveyard.

George’s family was satisfied and grateful that George was kept comfortable when dying, and that his goals and preferences for care were honoured. And the care team was strengthened by their experience of working well together and helping George achieve his goal.

[1] George’s story is shared with the permission of his family. Some details have been altered to fit the educational needs of this article (Katherine Murray, 2022).