People who are staying at home receiving palliative care often have a care plan developed by the person’s doctor and a visiting nurse. A care plan is a written plan that is created to meet the needs of the person. The plan is usually created during an in-home visit where the person’s personal situation, the strengths and care being provided by you and other family and friends are all outlined. The plan identifies the goals and objectives for care. For example, the care plan might state that you are helping with bathing, medications, etc. However, stating that you, as the caregiver, are assisting with those type of items does not really capture the challenges of doing so.

For example, assisting with bathing a person doesn’t really tell the health professionals what that is actually like when the person being cared for resists the bath. Also, a care plan might state that a caregiver (you) is helping with medications, but that doesn’t explain the actual challenges that you face when the person you are helping receives multiple medications several times a day including injections, inhalers, eye drops and crushed tablets. Managing urinary catheters, skin care around a central line, gastronomy tube feedings, and oxygen adds further complications for a caregiver.

It is critical that you explain to the visiting nurse and primary care physician not only what you are doing to help the person but the successes and challenges in doing so. Your observations are very important and need to be shared with the health care professionals.

The Importance of Observation

You have the unique responsibility of being the eyes, ears, nose and touch of the person’s physician. You can use your observation skills to gather subtle clues as to how the person is changing day to day. Sometimes a change can be emotional, physical and/or spiritual. A sign of spiritual distress may be a person asking “Why me? I must have been a bad person to suffer like this.” See Topic #14 Other signs or symptoms can show that the person’s medical condition has changed abruptly perhaps because of a sudden stroke or injury and other times the change can be a more gradual shift such as a reduction in food or fluid intake or decreased mobilization or increased drowsiness.

People who are suffering from a life-limiting illness or nearing end of life, may experience a few of these symptoms or many of these symptoms:

• anorexia or loss of appetite
• weakness and fatigue
• thirst
• fever
• jaundice (yellowish skin)
• nausea/vomiting
• constipation (difficulty passing stool)
• inability to sleep
• hiccups
• skin irritation
• loss of control of bladder and/or bowels (This is a common issue: See Topic #13)
• Swelling
• Pain: See Topic #17

It is difficult to manage multiple symptoms but providing a comfortable environment with familiar objects, pleasing colours, music, pillows for comfort, relaxation techniques can all help. As well, the person’s primary care physician needs to understand which of these symptoms the person is experiencing, how often they occur and the intensity of them.

Specific Signs and Symptoms that you Might Observe and What You Can Do

What you might observe: Profound lack of energy, body weakness, inability to concentrate, sleeplessness

What you can do to help:

• Provide small, frequent meals that combine complex carbohydrates with vegetables, dairy, protein will help keep energy stable
• Encourage moderate exercise, try gentle yoga for example
• Encourage short naps during the day in a comfortable chair
• Tell the doctor what you are observing

What you might observe: Seizures

What you can do to help:

• Don’t panic; most seizures last 2-3 minutes and end on their own
• Make sure the person is breathing
• Clear away sharp objects
• Remove eyeglasses
• Protect the head
• Don’t put anything in the person’s mouth
• Don’t attempt to restrain the legs
• Lie the person their side
• Afterwards, tell the person your name, where you are, what happened
• Let the person rest
• Notify the doctor and explain what you observed
• Call 911 IF the person stops breathing or the seizure lasts for more than 5 minutes

What you might observe: Headaches

What you can do to help:

• Keep a journal of when they happen and how long they last
• Tell the doctor what you have observed
• Notify the doctor if the meds stop working

What you might observe: Nausea, vomiting

What you can do to help:

• Have the person rinse their mouth with mouthwash
• Provide ice chips and or small sips of a cool liquid and anti-nausea medication
• Offer crackers or toast as they are mild foods that can help ease hunger without causing stomach upset
• Help the person relax
• Tell the doctor about the frequency of the vomiting and nausea

What you might observe: Swelling, tenderness, pain in the leg where one leg appears larger than the other and the skin on the leg turns red

What you can do to help:

• Call the doctor right away and explain what you are observing

It may simply be Edema which is caused by poor heart function and may be relieved by elevating the legs; however, it requires a physician to determine if this is the case.

Palliative Performance Scale

Developed by the Victoria Hospice Society, the Palliative Performance Scale is used to assess palliative patients in five categories:

1. the degree of ambulation
2. ability to do activities/extent of disease
3. ability to do self-care
4. food/fluid intake
5. level of consciousness

Note: Download the linked PDF at the top of this page to view the chart.

To use the chart, begin in the left column and read downwards until you see the levels that you are observing.

For example, a person who spends the majority of their day sitting or lying down due to fatigue from advanced disease and requires considerable assistance to walk even for short distances but who is otherwise fully conscious with good intake would score at PPS 50%.

Doctors and visiting nurses often refer to PPS scores and many times residential hospices only accept patients into the hospice once their score is at 30%. As a caregiver you can provide very important observations that could be used by a health care professional in determining a person’s Palliative Performance Score.

 

1. Read the scenario below.

Mariana, a proud and private Portuguese woman, speaks only some English. Mariana uses a walker at all times to move through her tiny apartment. When she pulls herself to standing she waits a few moments before she begins to move which she does very slowly. Mariana cannot reach her hands above her head to get dressed so you ensure that she has clothes to wear that do not require that they be pulled over her head. Mariana enjoys knitting, reading, watching television, and talking on the phone to her family members. Increasingly she is doing her favorite activities for less and less time and you often find her dozing in her recliner, even if she just got up for the day. You buy her groceries. Mariana enjoys home cooked Portuguese food, which you prepare but increasingly she has a smaller appetite. You provide foot and hair care as well. Typically, she gets up every morning around 8am and has a shower; but lately you notice that she is still in her bathrobe when you arrive.

Mariana’s doctor has asked you to help her assess Mariana’s PPS score by providing him with feedback in each of the following areas:

• Ambulation (how easily the person moves around)
• Activity level
• Self-care
• Intake
• Consciousness level

Because of the language barrier (your Portuguese is not fluent) and Mariana’s private nature, you tell the doctor that you are unable to assess Mariana’s symptoms. As well, you tell the doctor that you aren’t a nurse and therefore feel you have no expertise in helping the doctor assess Mariana’s symptoms.

2. Will you be able to help the doctor assess Mariana’s PPS score? Why or why not?

Write down your thoughts before checking the sample answer.

Sample answer:

Yes, you actually do know information in each of the four categories:

• Ambulation: When she pulls herself to standing she waits a few moments before she begins to move which she does very slowly. Mariana uses a walker at all times to move.
• Activity level: Mariana enjoys knitting, reading, watching television, and talking on the phone to her family members. Increasingly she is doing her favorite activities for less and less time.
• Self-care: Mariana cannot reach her hands above her head to get dressed so you ensure that she has clothes to wear that do not require that they be pulled over her head. You provide foot and hair care as well.
• Intake: Mariana enjoys home cooked Portuguese food, which you prepare but increasingly she has a smaller appetite.
• Consciousness level: Typically, she gets up every morning around 8am and has a shower; but lately you notice that she is still in her bathrobe when you arrive, often dozing off in her chair, even if she just woke up.

3. What can we learn from this scenario about the caregiver’s ability to assess symptoms and provide useful information to the person’s doctor?

Write down your thoughts before checking the sample answer.

Sample answer:

Although most caregivers aren’t trained health care professionals, it is remarkable what they are capable of observing and able to share with health care professionals that can be very useful in the person’s care plan.

 

Use these additional resources to learn more.

Journal
Caregiver daily journals are a useful way to keep track of information as things happen. You could write down each day what you observed, how the day went.

What to Expect with Various Illnesses: Canadian Virtual Hospice
http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home.aspx

When Death is Near: Canadian Virtual Hospice
http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home.aspx

Late Stage Caregiving
https://www.alz.org/care/alzheimers-late-end-stage-caregiving.asp

Dementia Symptoms & Caregiver Strategies: Managing Irritability in Cognitively Impaired Adults
http://www.cpmc.org/advanced/neurosciences/brainhealth/resources/irritablity.html

Hallucinations, Delusions and Paranoia Related to Dementia
https://www.agingcare.com/articles/hallucinations-delusions-and-paranoia-151513.htm