Identifying Patients Who May Benefit from Hospice Care: A Visual Observation Guide for Personal Care Facilities

Published on December 13, 2023

Updated on December 13, 2023

In the realm of healthcare, identifying when a patient may benefit from is a critical yet often challenging task. For caregivers, including Certified Nursing Assistants (CNAs) and Medical Technicians (Med Techs), visual observation can be a powerful tool to recognize signs that suggest a hospice referral might be appropriate.

This is tailored to assist caregivers in personal care facilities in identifying these signs through visual observation methods alone, helping provide compassionate and timely end-of-life care.

The Importance of Early Identification for Hospice Care

Understanding the Purpose of

Hospice care is a specialized approach to healthcare that focuses on providing comfort, support, and maintaining dignity for individuals who are facing terminal illnesses. This type of care becomes essential when curative treatments are no longer effective, and the primary goal shifts from trying to cure the illness to ensuring the patient's quality of life during their remaining time. Let's explore this concept further.

Providing Comfort and Relief

The core principle of hospice care is to offer patients relief from the symptoms and associated with their terminal illness. This includes managing pain, addressing nausea, breathlessness, and other distressing symptoms. It involves a holistic approach to care that not only considers the physical aspects of comfort but also attends to the emotional, social, and spiritual needs of the patient.

Support for Patients and Their Families

Hospice care extends its support not only to the patient but also to their family members and caregivers. It recognizes that terminal illnesses can take a toll on the entire family, and therefore, it offers counseling, education, and emotional support to help them navigate the challenges they face.

Preserving Dignity

Maintaining the patient's dignity is a fundamental aspect of hospice care. This means treating the patient with respect, allowing them to make choices about their care, and ensuring their wishes are honored. Hospice care respects the autonomy of the individual and focuses on enhancing their quality of life in the time they have left.

Early Identification for Timely Care

Identifying patients who may benefit from hospice care at an early stage of their illness is crucial. This is because hospice care is most effective when it is initiated in a timely manner. You don't have to be a hospice specailist to learn how to identify residents for the potential of being hospice appropriate.

Here are some key points to consider in terms of identifying who might be a candidate for hospice based on visual observation without needing an extensive medical background:

Visual Signs

Some visual signs that a patient may need hospice care are:

  • Increasing Trips to the ER: If a patient goes to the emergency room a lot, it may mean that their health is getting worse. For example, if they go two or more times in one month or three or more times in three months, they may need hospice care.
  • Changes in Physical Appearance: If a patient looks very different from how they used to look, it may mean that they are very sick. For example, if they lose a lot of weight without trying, or if their skin becomes pale or yellow, they may need hospice care. Losing five percent of their weight in three months or less, or ten percent in six months or less, is a lot. Pale or yellow skin may mean that something is wrong with their blood or liver. These changes may happen in the last four weeks or less.
  • Noticeable Fatigue: If a patient feels very tired or weak all the time, it may mean that they are very sick. For example, if they have trouble getting out of bed, or if they sleep more than usual, they may need hospice care. Feeling very tired or weak may happen suddenly in the past thirty days.

Changes in Cognitive and Mobility Function

Some changes in how a patient thinks and moves that may mean they need hospice care are:

  • Confusion or Disorientation: If a patient becomes more confused or disoriented, it may mean that they are very sick. For example, if they forget where they are, or who they are talking to, or what day it is, they may need hospice care. This may happen even if they do not have an infection.
  • Difficulty Communicating: If a patient has trouble talking or expressing themselves, it may mean that they are very sick. For example, if they cannot find the right words, or if they cannot make sense, or if they cannot hear or see well, they may need hospice care. This may happen even if they do not have a stroke.
  • Changes in Mobility: If a patient falls more often, or has trouble walking or moving, it may mean that they are very sick. For example, if they fall three or more times in a month, or if they need help to get around, or if they cannot sit up straight, they may need hospice care. This may happen even if they do not have an infection.
  • Loss of Trunk Control: If a patient cannot hold their head or body up, it may mean that they are very sick. For example, if they slump over in their wheelchair or bed, or if they cannot stay in one position, they may need hospice care.

Altered

Some changes in a patient's that may mean they need hospice care are:

  • Irregular Breathing: If a patient breathes in a strange way, it may mean that they are very sick. For example, if they breathe very fast or slow, or very shallow or deep, or if they stop breathing for a few seconds, they may need hospice care.
  • Changes in Blood Pressure and Heart Rate: If a patient's blood pressure or heart rate goes up or down a lot, it may mean that they are very sick. For example, if their blood pressure is too high or low, or if their heart beats too fast or slow, they may need hospice care.
  • Temperature Instability: If a patient has a fever or chills a lot, it may mean that they are very sick. For example, if their temperature is too high or low, or if they sweat or shiver, they may need hospice care. This may happen even if they do not have an infection.

Emotional and Behavioral Signs

Some emotional and behavioral signs that a patient may need hospice care are:

  • Social Withdrawal: If a patient becomes more isolated or less interested in others, it may mean that they are very sick. For example, if they do not want to talk to anyone, or if they do not join any activities or social events, they may need hospice care. Isolation and lack of interest may happen more often as the patient gets closer to the end of life.
  • Emotional Distress: If a patient shows signs of sadness, hopelessness, worry, or fear, it may mean that they are very sick. For example, if they cry a lot, or if they say that they have no hope, or if they are restless or scared, they may need hospice care. Depression and may affect the patient's quality of life and well-being.

Assessing Pain and

Some ways to assess if a patient is in pain or discomfort are:

  • Facial Expressions: If a patient makes faces that show pain, it may mean that they are very sick. For example, if they grimace or wince, or if they squeeze their eyes shut, or if they bite their lips, they may need hospice care. Grimacing or wincing may happen when the patient is touched or moved.
  • Guarding Affected Areas: If a patient protects or favors certain parts of their body, it may mean that they are in pain. For example, if they hold their stomach, or if they curl up their legs, or if they avoid touching their chest, they may need hospice care. Guarding affected areas may happen when the patient has a condition that causes pain in those areas, such as cancer or arthritis.
  • Verbal Cues: If a patient says that they are in pain or discomfort, it may mean that they are very sick. For example, if they complain of pain or discomfort, or if they ask for pain medication, or if they moan or groan, they may need hospice care. Expressed pain may happen when the patient is able to communicate their feelings.
  • Difficulty Swallowing: If a patient has trouble swallowing, it may mean that they are very sick. For example, if they choke or cough, or if they drool or spit, or if they refuse to eat or drink, they may need hospice care. Difficulty swallowing may happen when the patient has a condition that affects their throat or mouth, such as cancer or stroke.
  • Sudden onset pain: If a patient has pain all over their body when touched lightly, it may mean that they are very sick. For example, if they flinch or scream, or if they pull away or push away, or if they say that it hurts everywhere, they may need hospice care. Sudden onset pain may happen when the patient is close to transitioning, which means that they are near the end of life.

Using the PAINAD Scale to Visually Determine a Patient’s Level of Pain

Step 1: Observe Your Loved One

Before you can use the PAINAD scale, you need to observe your loved one for five minutes. During this time, look for any behaviors that might indicate discomfort or pain. These behaviors include:

  • Facial expressions: Look for frowning, grimacing, or other signs of distress on your loved one's face.
  • Vocalizations: Listen for moaning, groaning, or other sounds that might indicate discomfort.
  • Body language: Look for tense muscles, , or other signs of discomfort in your loved one's body language.
  • Breathing: Observe your loved one's breathing for any signs of distress, such as rapid or shallow breathing.
  • Consolability: Try to console your loved one by holding their hand or speaking to them in a soothing voice. Observe how they respond.

Step 2: Score Your Loved One’s Behaviors

After observing your loved one for five minutes, you can use the PAINAD scale to score their behaviors. The scale uses a score of 0-2 for each behavior, with a total score ranging from 0-10. Here's how to score each behavior:

  • Facial expressions: Look for furrowing of the brow, narrowing of the eyes, or deepening of the nasolabial furrow (lines on your face around your nose and mouth). Score 0 for no expression, 1 for a mild expression, and 2 for a moderate to severe expression.
  • Vocalizations: Listen for moaning, groaning, or other sounds that might indicate discomfort. Score 0 for no vocalization, 1 for occasional moaning or groaning, and 2 for frequent or loud vocalization.
  • Body language: Look for tense muscles, , or other signs of discomfort in your loved one's body language. Score 0 for relaxed muscles, 1 for tense muscles or restlessness, and 2 for rigid muscles or constant restlessness.
  • Breathing: Observe your loved one's breathing for any signs of distress, such as rapid or shallow breathing. Score 0 for normal breathing, 1 for occasional labored breathing or short periods of hyperventilation, and 2 for noisy labored breathing, long periods of hyperventilation, or Cheyne-Stokes respirations.
  • Consolability: Try to console your loved one by holding their hand or speaking to them in a soothing voice. Observe how they respond. Score 0 for easily consoled, 1 for difficult to console, and 2 for unable to console.

Step 3: Interpret Your Loved One’s Score

Once you have scored your loved one's behaviors, you can interpret their score. A score of zero (0) means no pain. A score of 1-3 indicates mild discomfort. A score of 4-7 indicates moderate discomfort. A score of 8-10 indicates severe discomfort. Providers should be notified for severe discomfort.

Shared Decision-Making About Starting Hospice Care

Talking to your doctor or nurse, your patient, and their family is very important. It can help you understand what is going on, what can be done, and what hospice care can offer. This can help you and your patient and their family make the best decisions about their care.

Some things to talk about are:

  • The prognosis: This is what the doctor or nurse thinks will happen to the patient in the future. For example, how long they may live, or what problems they may have.
  • The treatment options: These are the things that can be done to help the patient. For example, medicines, surgeries, or therapies. Some treatments may help the patient feel better, but some may not work or have side effects.
  • The potential benefits of hospice care: These are the things that hospice care can do to help the patient and their family. For example, hospice care can provide pain relief, emotional support, spiritual care, and help with daily activities.

Talking about these things can help the patient and their family understand their situation and their choices. It can also help them express their wishes and preferences. This can make them feel more in control and more at peace.

Timely Referral to Hospice

Once you and your patient and their family decide that hospice care is the right choice, you should contact a hospice provider as soon as possible. This can help the patient get the care and support they need when they need it the most.

Some benefits of a timely referral to hospice are:

  • The patient can have more time to enjoy their life and their loved ones.
  • The patient can have more comfort and less pain and suffering.
  • The patient can have more quality of life and dignity.
  • The patient can have more access to services and resources.
  • The family can have more help and guidance.

A timely referral to hospice can make a big difference for the patient and their family. It can help them cope with the challenges and changes that come with a serious illness. It can also help them prepare for the end of life.

Conclusion

Identifying patients who may benefit from hospice care through visual observation is a crucial skill for caregivers in personal care facilities. Early recognition allows for timely referrals, ensuring patients receive compassionate end-of-life care when it is needed most. By paying attention to physical, emotional, and behavioral changes, as well as collaborating with healthcare professionals, CNAs, and Med Techs can play a pivotal role in enhancing the quality of life for their patients during this challenging journey.

Resources

Identification of patients who may benefit from palliative care

Understanding Hospice Care: Is it Too Early to Start Hospice?

What's the process of getting your loved one on hospice service?

Picking a hospice agency to provide hospice services

Medicare — Find and compare hospice providers

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

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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

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