“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.” – Dame Cicely Saunders

Advanced Care Planning

Advanced Care Planning is the process by which you begin to think about, talk about and document your wishes for future healthcare. These documents can be used by your family and healthcare team to guide your care if you get sick or you are at the end of your life.

Three forms are included in Advanced Care Planning:

1. Goals of Care Designation Order
2. Tracking Record
3. Personal Directive

These forms are all contained in what is called “A Green Sleeve.’ This sleeve should be kept in a common area, like on your fridge, so if Emergency Medical Services needs to come to your home they can easily access it.

Goals of Care Designation Order

This is a medical order from your doctor that lets healthcare practitioners know what your wishes are when they are deciding on healthcare interventions and future care. Your doctor/Nurse Practitioner will speak with you and/or your ‘agent’ who is a person you choose to make decisions on your behalf. Your doctor/Nurse Practitioner will speak with you to better understand your healthcare goals and who you are as a person. They will then write your Goals of Care Designation as a medical order. When our order is made you will have a decision to make about three general approaches to care. Within each approach there is also a number (1-3) assigned.

Medical Care (M)

This is for when you choose to have medical tests and interventions to cure or manage an illness but do not want resuscitative or life support measures used.

Resuscitative Care (R)

This is for when you choose to have any medical or surgical intervention, including resuscitative and life support measures, to sustain your life.

Comfort Care (C)

This is for when you choose not to have any resuscitative or life support measures in addition to medical or surgical interventions to treat an illness. Instead, the focus is on alleviating symptoms. This is for people who have a life-limiting illness and medical treatments cannot change its course.

Tracking Record

Your decisions about your care may change over time. This is a piece of paper used to keep a record of conversations about your Advanced Care Plan with your healthcare provider.

Personal Directive

A personal directive is a legal document that states one or two people, also called ‘agents,’ that you choose to make decisions on your behalf. This is for if you become incapacitated by illness or injury and are unable to voice your wishes. In this document you can also state under which circumstances this person(s) can make decisions.

Whether it is a meeting with your family doctor, nurse practitioner, liver specialist or mental health practitioner it is important to plan and think about your appointment before you attend. This is key to developing a positive relationship with your practitioner and to ensure you feel understood and responsible for your care. This ensures that if you are dealing with an illness or injury you and your practitioner can make a decision about your care according to your beliefs, values, and lifestyle. This will also give you more confidence when dealing with an illness or injury and allow you to advocate for yourself and your health. To prepare for an appointment you can do several things including:

• Bringing a family member or friend with you
• Ask for instructions and keep a notepad or binder to keep track of appointments, notes and recommendations from your doctor
• Schedule your appointments as required and call to ensure you have the correct time

Planning for your upcoming appointment

Depending on your situation and your healthcare provider, the length and appointment type may be different. You may have to answer important questions, undergo certain monitoring procedures, make decisions, or be dealt with some difficult news.

Forms

There are certain forms you can fill out to help you think through what is needed for an upcoming appointment. They can be found here

A new appointment

If you are seeing a new doctor, consider bringing your identification, a list of all medications you are taking, and a breakdown of symptoms with a timeline.

Sample outline for appointment planning

Here is a basic outline for planning before an appointment with your doctor:

Make a list of your concerns /questions

Keep in mind some doctors have limited time periods to spend with you and this may be limited to one concern. Call the clinic ahead of time to verify this and book another appointment if you have more than one major concern.

Bring important information with you

This can include all your medications and supplements, photo identification, health care card, insurance card, and contact information for other doctors or providers that you see

Decide who you want to bring with you

Depending on your situation and abilities you may want to bring a family member, friend or support worker with you. This can be someone who can help you understand what is being told to you, or they can be there for moral support. Ensure this is someone who will not take over the appointment, but will support you as you ask questions or listen to your provider.

Inform your doctor of any significant changes in your life

As you live day to day, keep track of new symptoms or concerns you have over time as they relate to the doctor you will be seeing. If none of these are emergent you can let your doctor know about these changes since your last visit. Other things to tell your doctor about are new diagnoses in your family, new stresses, reactions to medications, change in energy, mood or appetite, and if you had to go to the emergency room for any reason. You can also talk about travel if it took you out of the country.

Be sure you have any supportive equipment you need

If you have trouble hearing, bring your hearing aids. If you have trouble seeing, bring your glasses. Also, if you require a brace or any type of equipment bring this with you so your doctor can see how it is working for you. If you require an interpreter, call the office or clinic ahead of time and request one. If you have a family member who can interpret for you, ensure they are available for your appointment date.

Accessing additional resources can be particularly challenging for those experiencing a chronic illness like cirrhosis. Finding what programs and services you are eligible to receive can be difficult for you if you are not already familiar with your local community supports. That makes it especially important to connect with a social worker or your health care provider for assistance in accessing supports in your home community.

Homecare

Home Care provides help with activities of daily living that the client cannot do themselves or cannot get help with from another source; these are often activities that are considered necessary for you to safely maintain your independence, like personal hygiene, medication management, and assistance/assessments for medical equipment through Alberta Aids to Daily Living (AADL).

Anyone living in Alberta with a valid healthcare card can receive Home Care services, as long as their needs can be met safely in their place of residence. Ask your healthcare provider or social worker for more information, or contact Home Care by using the self- referral information below.

You can contact 8-1-1 by telephone to be connected to a home care office in your zone, or use the phone numbers below for a specific office near you.

Each number is staffed by Registered Nurses who can answer any questions and provide you with resources and supports available in your community. They are happy to discuss your healthcare needs, complete an assessment and send a referral to the most appropriate AHS healthcare provider or service.

Contact information by zone:

• North: 1 (855) 371-4122
• Edmonton: (780) 496-1300
• Central: 1 (855) 371-4122
• Calgary: (403) 943-1920 or 1 (888) 943-1920 (toll-free)
• South
  • Bow Island: (403) 545-2296
  • Brooks: (403) 501-3244
  • Lethbridge and Area: (403) 388-6380 or 1 (866) 388-6380 (toll-free)
  • Medicine Hat: (403) 581-5750
  • Oyen: (403) 664-3651

 

Continuing Care

If you or your loved one requires extensive daily care, please contact 8-1-1 to begin the assessment process and have a case manager assigned. For additional information and frequently asked questions, refer to the AHS webpage on Continuing Care access

Alberta Aids to Daily Living (AADL)

Alberta Aids to Daily Living (AADL) helps Albertans with a long-term disability, chronic or terminal illness to pay for basic medical equipment and supplies. [Adapted from Ministry of Health Alberta].
To be eligible, a clinical assessment by a health care professional is required. The health professional determine what equipment and supplies you can get through the AADL program. Learn how to apply for benefits here.

AADL is a cost-share program. Albertans pay 25% of the benefit cost to a maximum of $500 per individual or family per year. Low-income Albertans and those receiving income assistance do not pay the cost-sharing portion.
To view what is covered and what is not covered under the AADL program, refer to the Government of Alberta website

Homecare can assist you with the assessment process for accessing medical equipment and supplies through AADL. Ask your healthcare provider, social worker, or case manager for more information.

 

Accessible and Affordable Transit Services

Both cost and/or accessibility can be a barrier to people accessing public transit. Below is a list of accessible and affordable program options available to Albertans in communities with public transit networks.

Leisure Programs

Both cost and/or accessibility can be a barrier to people accessing leisure and recreational programs. Below is a list of accessible and affordable program options available in Edmonton and Calgary for persons with limited means or accessibility concerns.

Tax Clinics

A free tax clinic is a place where eligible people can go to get their tax returns done for free. Free tax clinics are hosted by community organizations across Canada, through the Community Volunteer Income Tax Program. There are different types of free tax clinics:

• Walk-in: you show up during advertised hours and a volunteer will do your tax return for you on a first-come, first-served basis.
• By appointment: you make an appointment to see a volunteer at a time that suits you.
• Drop-off and pick-up: you show up during advertised hours and drop off your documents for a volunteer to do your return at a later time.

You have to prove your identity when you pick up your return and documents.

You can call 2-1-1 or your community’s municipal office directly for more information about free tax clinics in your area. You can also refer to the Government of Canada website database to find available tax clinics in your community

Many benefit programs require you to demonstrate financial need, and your most recent annual income. That makes filing your taxes regularly a very important step in accessing available supports. Ask your social worker, or have your care provider refer you to a social worker for assistance in finding tax clinics and other income resources.

Tiredness or lack of energy can be common in people with chronic conditions, like cirrhosis. Even if you rest or get lots of sleep, you might still feel tired or have low energy.

Causes

Feeling tired can be cause by many different things like changes with sleep, long workdays or stress. People with cirrhosis can also have conditions like low iron or vitamin D, or a build-up of toxins that cause tiredness.

Treatment

Lifestyle Changes

• Exercise: If you are able to, consider physical activity 3-5 days a week. Exercise has many benefits including improving your mood and energy level.
• Nutrition and hydration: Eat a balanced diet and drink enough water to stay hydrated (unless your healthcare team tells you not to). This will help improve your energy.
• Sleep: It is important to get a good night’s rest in order to reduce tiredness. You can find tips for improving sleep here.
• Mind and body therapies: Try complementary treatments such as mindfulness, support groups, or acupuncture

Medication

If you continue to have problems with feeling tired after trying the lifestyle changes and self care tips on this page, talk to your healthcare team about whether medicine may be right for you.

Trouble sleeping is common in people with cirrhosis. Some people feel sleepy during the day, even after having enough sleep. Other people feel sleepy during the day and wide awake at night.

Sleep is important because it gives you energy to get through your day. When you have trouble sleeping for weeks at a time, it can make your health worse. Sleep is especially important if you are living with a chronic condition like cirrhosis.

Causes

Having trouble getting a restful sleep may be because of your cirrhosis, or because of other symptoms like itching, muscle cramps, pain, or trouble breathing.

Take this quiz to see if you may have sleep troubles: Epworth Sleepiness Scale

Treatment

Complementary treatments

• Mind and body therapies like mindfulness, yoga and meditation can improve sleep.
• Bright-light therapy can also be helpful. It includes getting bright light exposure in the early hours of the morning and avoiding bright light in the evenings (including mobile phones, tablets etc).

Medications

If you are still having trouble with sleep after trying the complementary treatments and self care tips on this page, talk to your healthcare team about whether sleep medicine may be right for you. If you have cirrhosis, you should be extra cautious with sleep medicines. You can find more information on medication safety here.

Agitation

What is agitation?

Agitation is a sense of inner tension and uneasiness. When experiencing agitation, you may feel the need to move around or may become annoyed with your those around you. Agitation is not an illness, but can be a symptom of a mood disorder (like depression) or a medical condition. It is a normal emotion. But it is more likely to show up when you’re under a lot of stress. It can also happen if you use drugs or alcohol.

What causes agitation?

Agitation is a normal emotion that you can experience at any point in your life. In the majority of cases, there is no need for worry or concern. Agitation can be experienced more often if you are living with a health condition, like cirrhosis.
Sometimes a medical condition can cause agitation. It’s pretty common to feel unsettled if you have hormone problems or are struggling with a psychological condition like schizophrenia or substance use disorder. There are other causes of agitation, that’s why it is important to talk to your doctor if you get agitated, especially if you feel like it is for no reason.

For people living with cirrhosis, agitation can be caused by:

• Waste products: If your liver is not working properly, toxins can build up in your body and affect your brain and mood.
• Medicine: Some medications may cause you to feel moody or short-tempered
• Stress caused by your chronic illness. Living with a chronic disease is stressful. Strong emotions can come from feeling hopeless or nervous about having a life threatening disease.

How are causes of agitation diagnosed?

Your doctor will talk to you about your agitation and will ask questions about your medical history, your lifestyle, and any other concerns you may have. Your doctor may also refer you to a mental health professional (psychologist, psychiatrist, therapist, counselor, etc.) for further support.

Symptoms of agitation:

• feeling uneasy
• having an urge to move, often with no purpose
• feeling ‘cranky’ or short tempered
• being less patient than normal
• feeling nervous with no explanation
• unexplained and excessive excitement

Treating agitation

Treating your agitation will depend on your current health status. Below are some general tips you can try to relieve agitation:

• Deep breathing exercises
  • When breathing in (inhaling) pretend that you are smelling flowers. When breathing out (exhaling) pretend that you are blowing out birthday candles.
• Yoga or meditation
• Exercise (walking, running, swimming) or simple stretches
• Trying to identify situations, people, or things that cause you stress and limit your contact with them
• Using technology
  • Applications like Calm or Headspace provide simple guides to promote mindfulness and relaxation
• Problem solving
  • Often problems are very real and unavoidable. For example, you have liver disease and need routine medications and procedures to sustain your life which you have little control over. When you meet a challenge that can be changed, like improving lab values, make a plan to solve it and mark your progress along the way. Ask for assistance from a healthcare team member, such as a dietitian who can help you discover ways to change your diet and improve these values.
• Use humor
  • Staying positive and finding the humor in life, especially during treatment for liver disease, will help you remain relaxed and handle stress better.
  • Watch funny movies or tell funny stories to fill your time with positive thoughts instead of negative thoughts.
• Change your environment
  • Surround yourself with calm, uplifting people. When possible, avoid people or situations that tend to agitate you.
  • Bring an uplifting book, calming playlist or other means of distraction with you to your appointments
• Talk with your family and friends

If these techniques do not work to reduce the stress you are experiencing, your health care provider may refer you to a mental health professional for further support.

Mental Health conditions

If you have been diagnosed with anxiety, depression or another mood disorder, your doctor may recommend medications, therapy, or a combination of both to manage it.

 

 

Restlessness

What is restlessness?

Restlessness is a sensation where you feel you are unable to rest or relax. It has many different causes, including anxiety and boredom, and can be experienced in different ways. For some people they become restless in stressful situations, like tests and doctors appointments. For others they become restless when they are trying to sleep. For patients living with chronic liver disease, restlessness is most often felt as restlessness leg syndrome.

Restless Leg Syndrome

Restless Leg Syndrome is a condition that causes you to move your legs uncontrollably, usually because of an uncomfortable feeling or sensation. It usually happens at night when you’re sitting or lying down. Moving tends to relieve the pain or uncomfortable feeling.

Symptoms

The main symptom is having the urge to move your legs. Other things that may happen include:

• Worsening of symptoms at night
• Nighttime leg twitching. Restless leg syndrome may be accompanied by limb movements during sleep. This is when your legs twitch and kick while you sleep

Causes

• Family history. Sometimes the syndrome runs in families
• Pregnancy
• Chronic disease. Chronic diseases like cirrhosis may make you more likely to develop restless leg syndrome

Diagnosing Restless Leg Syndrome

Your doctor will take your medical history and ask for a description of your symptoms.

Treating Restless Leg Syndrome

Depending on the cause and the impact of restless leg syndrome on your life, your doctor may recommend different things.

• Medications. Your doctor may prescribe different medications including those that affect dopamine and calcium. Because most of these medications are broken down by your liver, it is important to talk to your doctor before taking them.

Things you can try:

• A warm bath
• Massaging your legs
• Apply heat or ice packs, making sure to always put a cloth between your skin and the source of heat or cold
• Establish a sleep schedule and routine.
• Exercise. Try to exercise regularly.
• Avoid alcohol and illicit substances.
• Try to cut back/avoid caffeine and nicotine.

When to see a doctor

Many people with restless leg syndrome never seek help. It is important to talk with your doctor if you are experiencing restless leg syndrome because it can interfere with your sleep and affect your quality of life.

Causes

Pain can be complicated. Each person experiences and responds to it differently. Some people might have pain related to cirrhosis, but there are many possible causes. Even your mood, or having depression or anxiety can also cause or worsen pain.

It’s important to talk to your healthcare team if you are having pain and they can help determine what the cause may be.

Treatment

Mind and Body Therapies

It’s important to consider how mind and body therapies might help manage your pain. For many people these therapies control pain, or help lower it a lot. Some examples of mind and body therapies are:

• Meditation
• Yoga
• Counseling

Medications

If you have cirrhosis, you should be extra cautious with pain medications. You can find more information on medication safety here.