End-of-Life Process

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Introduction   

Have you ever cared for someone who was dying, known someone who was on hospice, or just wondered what happens as we die? Hospice involves caring for the terminally ill as they begin the end-of-life process and is utilized by healthcare facilities around the country. Hospice care can be a short or long journey, with many ups and downs. For some, the prognosis might be obvious, but for others, it might be filled with many questions and much uncertainty. Both caregivers and patients seek to understand just what the end-of-life process and its care entails. Hospice clinicians should spend time providing education on end-of-life process to those involved in caring for the patient. 

Oftentimes, caregivers have little to no experience in caring for a patient experiencing the end-of-life process and can easily find themselves feeling overwhelmed, confused, and burned out. Understanding what to expect during the final weeks of life is imperative in order to cope with the changes as they occur. The end-of-life process can vary from person to person. Although patients progress through the end-of-life process differently, there is usually a recognizable pattern of decline that occurs. In order to provide the best possible care and prepare both the hospice patient and their family members, it is important for the nurse and caregiver to be able to distinguish the phases of the end-of-life process: transitioning, actively dying, and final moments. 

Transitioning 

This phase of the end-of-life process, otherwise identified as the pre-active phase, usually signals that a person is approaching the last two-to-three weeks of their life. During this time, caregivers might start to notice obvious changes; an increase in sleeping, for example. A transitioning person can sleep upwards of twenty hours per day. This significant increase is part of an overarching decrease in the patient engaging with the world and day-to-day life.  

Beyond sleeping, examples of this disengagement include interacting less with friends and family, less desire to do one’s usual activities, and a lack of interest in things that were once pleasurable. Additional signs of a patient transitioning include increased weakness and decreased mobility. These changes typically include a decline in function, becoming non-ambulatory, chairbound, and ultimately, bedbound. Progressively, the patient will become more dependent on their caregivers to assist them with activities of daily living (ADL), which include bathing, eating, transferring, toileting, and continence. 

Another indicator that someone may be transitioning is a change in nutrition and intake. Eating and drinking less is an expected part of decline during this time. Many patients will report a lack of appetite, taste changes, and an overall lack of interest in food and liquids. Changes in swallowing may further complicate a person’s ability to eat and drink.

It is not uncommon to downgrade a person’s diet during the transition phase. This might include going from a regular diet, down to soft, and finally, to pureed. Liquids are usually given in small amounts and with an added thickener. These changes are necessary to prevent choking and aspiration.  

Increased agitation, anxiety, and restlessness may also arise during the transitioning phase of the end-of-life process. Terminal agitation and terminal restlessness are both unique to the last week or so of someone’s life and are often caused by physiological changes that occur during the end-of-life process but can also be a result of medication or emotional changes. Despite if the patient had lived peacefully and calm in the past, it is important to note that these symptoms may still occur.  

Signs of terminal agitation include an inability to remain still, picking at items in the surrounding environment, and increased confusion. Fortunately, there are medications that can be given at the end of life to promote comfort and stop these symptoms when they arise. Lastly, it is not uncommon for the transitioning patient to have visions of and talk to deceased friends and family – both are normal and could sometimes be interpreted as a welcoming sign from loved ones. 

Active Dying 

Following the transition phase, most patients will then enter the final phase of the end-of-life process, the active dying period.  This phase usually last only two to three days and showcase significant signs of patient decline that differ from the previous phase, including a decrease in alertness and responsiveness. For example, a patient may go from a semi-comatose state to comatose or obtunded and minimal reaction should be expected. Their eyes may be open or shut, and there is little movement in all extremities. This period can be described as a deep sleep. 

Caregivers often describe it as a time of waiting. Cognitive changes, in combination with the previous changes in swallowing, make the intake of food, liquids, and medications unsafe. The patient is at high risk for aspiration. Mouth swabs can be used to hydrate the oral cavity and to do mouth care. Medications that are liquid or can dissolve under the tongue are safe and can be used to manage symptoms at the end of life. Hospice patients are provided a comfort kit of medications to use should symptoms arise.  

Additionally, changes in vitals are expected during this phase, and they typically do not cause the patient any discomfort. For example, temperature fluctuation is common at the end of life. It is not abnormal to have an elevated temperature during the active phase of the end-of-life process. This can be remedied with cooling measures such as a cool towel on the forehead or a fan to cool down the room. The skin may feel clammy as well.  

Following, changes in blood pressure and heart rate may also occur. Blood pressure begins to trend lower during the pre-active phase and can become very low during the last few days of life. The heart rate will usually trend upward and can be well over 100 beats per minute, however, this is just something for the hospice nurse to note and is not usually treated.  

Pain can also be an area of concern for someone who is actively dying, and of course, no one wants to see their loved one in pain during their final days of life. The body becomes very sensitive to the slightest movement or touch, which can present challenges for caregivers when considering that the patient still needs to be cleaned, changed, and repositioned. When the patient is no longer verbalizing their comfort, verbal pain cues must be assessed. These include grimacing, a furrowed brow, frowning, and possibly moaning. In some cases, repositioning can be an effective pain-relieving measure.  

Decreased urination is also common during the active phase of the end-of-life process. This is completely normal and expected. Caregivers may find that they do not need to change diapers as often. Urine may also appear darker in color, appearing a deep amber color due to more concentrated urine. 

Excessive secretions can lead to something commonly known as the “death rattle.” This term is almost synonymous with the last days of life. It can be described as a moist sound that is audible when someone breathes and is a good indicator that death is near. The secretions collect in the throat due to a lack of coughing and the inability to clear them out. Turning the patient on his or her side may help the secretions drain, and there are medications that can be administered to help dry them out. It is important to note that not everyone will experience this, and by the time it occurs, there is a disconnect within the patient, and he or she is not likely to experience any discomfort. 

Final Moments 

It can be hard to imagine the final moments of someone’s life. This is especially true for caregivers and families who have witnessed steady decline throughout both phases of the end-of-life process. It is the role of the hospice clinician to provide education regarding what to expect during this time. There are likely to be signs that death is possible at any moment. A patient can be expected to be comatose with little to no response when death is imminent. 

In addition to changes in vitals described previously, changes in respirations usually occur. Patterns can vary from shallow and fast to deep and slow. Periods of apnea are also normal. Cheyne-stokes breathing may also be present. Skin changes are also expected; pallor, cyanosis, and mottling are signs that death is near. The body may begin to feel cool, especially in the hands and feet. Comfort medications can still safely be used up until death occurs. As mentioned before, foods and liquids should not be given at this point. Caregivers should continue to talk to the patient, as their hearing will remain until the end. 

Conclusion 

Hopefully, this has been an informative piece on what to expect for end–of–life care. Hospice can be a great resource for both the patient and caregiver. Most people do not have experience in caring for a dying person and need education and assistance throughout the journey. Not everyone who is dying will experience all the symptoms mentioned in this course, and it is important to note that everyone experiences the end-of-life process in their own way and own pace. 

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