Identifying when a patient may benefit from hospice care 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 for recognizing signs that suggest a hospice referral might be appropriate.
This guide is tailored to assist caregivers in personal care facilities in identifying these signs through visual observation methods, helping provide compassionate and timely end-of-life care.
The Importance of Early Identification for Hospice Care
Understanding the Purpose of Hospice Care
Hospice care is a specialized approach to healthcare that focuses on providing comfort, support, and maintaining dignity for individuals 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 disease 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 discomfort associated with their terminal illness. This includes managing pain and addressing nausea, breathlessness, and other distressing symptoms. Hospice care involves a holistic approach that considers the physical aspects of comfort and attends to the patient’s emotional, social, and spiritual needs.
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 respecting the patient, allowing them to choose their care, and ensuring their wishes are honored. Hospice care respects the individual’s autonomy and focuses on enhancing their quality of life when 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 promptly. You don’t have to be a hospice specialist 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 patients go to the emergency room often, their health may worsen. 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 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 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 tired or weak all the time, it may mean 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: A patient becoming more confused or disoriented may mean they are very sick. For example, if they forget where they are, 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: Patients with trouble talking or expressing themselves may be sick. For example, if they cannot find the right words, make sense, or 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 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 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.
Some changes in a patient’s vital signs that may mean they need hospice care are:
- Irregular Breathing: If a patient breathes strangely, 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 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 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: A patient becoming more isolated or less interested in others may mean they are very sick. For example, if they do not want to talk to anyone or 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 they are very sick. For example, if they cry a lot, say that they have no hope, or are restless or scared, they may need hospice care. Depression and anxiety may affect the patient’s quality of life and well-being.
Some ways to assess if a patient is in pain or discomfort are:
- Facial Expressions: If a patient makes faces showing pain, it may mean they are very sick. For example, if they grimace or wince, squeeze their eyes shut, or 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 body parts, it may mean they are in pain. For example, if they hold their stomach, or if they curl up their legs, or 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 they are in pain or discomfort, it may mean they are very sick. For example, if they complain of pain or discomfort, ask for pain medication, or moan or groan, they may need hospice care. Expressed pain may happen when the patient cannot communicate their feelings.
- Difficulty Swallowing: If a patient has trouble swallowing, it may mean they are very sick. For example, if they choke or cough, drool or spit, or 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 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 Determine a Patient’s Level of Pain Visually
Step 1: Observe Your Loved One
Before using the PAINAD scale, you must observe your loved one for five minutes. During this time, look for 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, restlessness, or other signs of discomfort in your loved one’s body language.
- Breathing: Observe your loved one’s breathing for signs of distress, such as rapid or shallow breathing.
- Consolability: Try to console your loved one by holding their hand or speaking to them soothingly. 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 mild, and 2 for moderate to severe.
- 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, restlessness, or other signs of discomfort in your loved one’s body language. Score 0 for relaxed muscles, 1 for tense or restlessness, and 2 for rigid or constant restlessness.
- Breathing: Observe your loved one’s breathing for 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 soothingly. 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 of severe discomfort.
Shared Decision-Making About Starting Hospice Care
Talking to your doctor or nurse, your patient, and their family is essential. It can help you understand what is happening, what can be done, and what hospice care can offer. This can help you, your patient, and their family make the best decisions about their care.
Some things to talk about are:
- The prognosis is what the doctor or nurse thinks will happen to the patient in the future, such as 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, such as 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 what 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 choices. It can also help them express their wishes and preferences, making them feel more in control and at peace.
Timely Referral to Hospice
Once you, 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 care:
- 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 a 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 and 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 needed most. By paying attention to physical, emotional, and behavioral changes and 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
Top 30 FAQs About Hospice: Everything You Need to Know
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
National Hospice Locator and Medicare Hospice Compare
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
Top 30 FAQs About Hospice: Everything You Need to Know
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
National Hospice Locator and Medicare Hospice Compare
Eldercare Locator: a nationwide service that connects older Americans and their caregivers with trustworthy local support resources
CaringInfo – Caregiver support and much more!
Surviving Caregiving with Dignity, Love, and Kindness
Caregivers.com | Simplifying the Search for In-Home Care
As an Amazon Associate, I earn from qualifying purchases. The amount generated from these “qualifying purchases” helps to maintain this site.
Compassionate Caregiving series
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