Maintaining your quality of life during a life-limiting illness

While you receive end of life and palliative care, it can help to try to:

• Continue your life as normally as you can, including simple things such as following a routine
• Stay connected with family and friends
• Eat well and be physically active where possible, which can help you feel more positive
• Enjoy each day and keep doing the things you love for as long as you can

End of life and palliative care is more than medical treatment and relief from pain or discomfort. It aims to support your overall sense of wellbeing. With this in mind, it is important to look after yourself, stay connected with the people around you, and do things that give your life meaning. You can do some of these things on your own; for others you may need help from your family and friends, your doctor, the palliative care team and other healthcare professionals.

Person-centered and holistic care#

End of life and palliative care is based on “person-centered care,” which means you are treated the way you want to be treated. You are involved in planning and decision-making about your care, according to your preferences.

Holistic care means the care team responds to you as a whole person, taking into account your physical, psychological, social, emotional, spiritual and cultural needs. It also considers the needs of your family, friends and those around you.

Talk with your family, close friends and your palliative care team about what they can do to help you make the most of each day. A care plan should include a range of emotional and spiritual supports as well as medical treatment for your symptoms. Therapies such as massage, art and music therapy can help you do what you enjoy and make the most of your time.

Eating and exercise#

If you are able to, try to make eating a range of healthy foods, being physically active, getting some fresh air, and keeping up good personal hygiene part of your daily routine. Taking care of yourself as best you can may help you feel more positive, build self-confidence and lower your chances of new illness or complications.

Depending on your illness, you may feel that eating foods you enjoy, even if they are not the healthiest, matters more to you than eating well. That is a personal choice.

Sleep and rest#

Maintaining a balance of rest and activity that works for you will help you enjoy a good quality of life. You may need more sleep at certain times, or it may suit you to nap during the day.

Difficulty sleeping can become an issue depending on your illness or your medication. If sleep problems are concerning you, talk to a member of the palliative care team or your doctor.

Setting personal goals#

It is up to you how you spend your time, and it makes sense to spend your days doing what is meaningful and important to you. This may involve spending more time with family, finishing a project, or getting back to nature. Setting personal goals can help you keep looking toward the future.

Share your ideas with your family and friends so they can support you. You may need help with things like transport and activity materials. Members of your palliative care team, such as your nurse, speech therapist, physiotherapist or music therapist, are there to help you achieve your goals, so talk with them about how they can help.

Hobbies and interests#

Doing what you enjoy is one of the best ways to keep your spirits up and your mind active. If you already have a hobby or interest, there is no reason to stop just because you are receiving palliative care. Whether you enjoy sport, history, collecting, yoga or craft, your palliative care team will do what they can to support you. Talk with your family and friends about what you are working on, and ask them to bring you materials if you need them.

Being creative#

Being creative is a great way to reduce stress, express your feelings and stay positive. It does not matter whether you have always been creative or are trying something for the first time. Your family and palliative care team can help you get started. You might join group music sessions, make artworks and gifts for your family, or simply enjoy your favorite songs, poems and paintings in your own way.

Sharing memories and recording your story#

Sharing memories with family and friends is a wonderful way to spend quality time together, stay positive and reflect on your life. Looking through photos or telling stories lets you think about your lives together and make new memories.

Writing down or recording your life story can be a lovely gift for your family and a way for you to reminisce. How you document your life is up to you: you might write things down, use photographs and clippings, or make an audio or video recording. You may feel your life “won’t be interesting to anyone else,” but you may be surprised by the joy that sharing your past can bring. Ask your family or friends to help set you up with the devices or materials you need. Many residential homes and hospitals have in-house services or can recommend professional help.

Reaching out to others#

After a diagnosis of a life-limiting illness, you may feel the urge to reach out to people you have not seen in a while. This is perfectly normal. Seeing old friends and sharing your history is a good way to connect and process your feelings about dying.

Dealing with stress#

You may have mixed emotions and feel stressed when dealing with a life-limiting illness. To help manage stress, consider including some of these in your daily or weekly routine, if possible:

• A hobby or pastime you enjoy
• Physical activity
• Relaxation exercises
• Keeping up social contact with friends and family

Looking after your emotions#

Everyone has times when they feel low or flat. When dealing with a life-limiting illness, you might worry about what is happening, feel helpless, or fear the unknown. This is very common and can lead to anxiety, depression and negative emotions such as sadness or frustration.

Talking things over can help you and your family cope. You can talk with a trusted friend or family member, your doctor, a palliative care team member or a counseling helpline.

Depression usually means feeling sad, down or miserable most of the time, or losing interest or pleasure in your usual activities, for at least two weeks. There are many types of anxiety disorders, and the symptoms differ, but general signs can include:

• Feeling very worried or anxious most of the time
• Finding it hard to calm down
• Feeling overwhelmed or frightened by sudden, intense panic or anxiety
• Recurring anxious thoughts that may seem unimportant to others
• Avoiding situations or things that cause anxiety, such as social events or crowded places
• Ongoing difficulties such as nightmares

If you have these feelings, contact your doctor or the palliative care team. An assessment can be done so that steps can be taken to help ease the depression or anxiety. You can arrange counseling through your doctor or the palliative care team. If you need immediate support, you can contact a trained counselor through a counseling helpline.

Spiritual, religious and cultural care#

After being diagnosed with a life-limiting illness, you may find yourself worrying about what lies ahead, wondering about the meaning of life, or thinking about what really matters to you. These feelings are a normal part of the process at the end of life.

You may find meaning in your religion, if it has been part of your life, or you may choose to focus on your relationships and on activities that are meaningful to you. The palliative care team are there to talk with you about what to expect as you approach the end of life and to answer your questions.

Your cultural values and needs should be respected. You are entitled to be treated with respect, whatever your cultural background, religion or sexual orientation. Pastoral care workers (also known as spiritual care workers) are trained professionals available as part of your palliative care team. They can help you work through your feelings, whether or not you are religious, and can arrange visits from spiritual leaders such as reverends, priests, rabbis and imams. If you are not religious, you might prefer to focus on a “life review,” joining a support group, enjoying nature, or spending time with family and friends.

Individual needs#

If you have a hearing or speech impairment, ask your palliative care provider about extra help or relay services. If you speak another language, ask about interpreting services so you can take part fully in conversations about your care.

Key points#

• End of life and palliative care is more than medical treatment and relief from pain or discomfort.
• A care plan should include emotional and spiritual support as well as medical treatment for your symptoms.
• Maintaining a balance of rest and activity that works for you helps you enjoy a good quality of life.
• It makes sense to spend your days doing what is meaningful and important to you.
• Anxiety and depression are very common; talking things over and getting an assessment can help.

Where to get help#