Palliative care (for the patient)

This information is for you if you have advanced disease that is no longer responding to treatment. You and your loved ones may have been focused on treatment in hopes of remission or recovery, this focus may now have to shift to making choices about care and future steps. Receiving a terminal diagnosis is a traumatic experience for the patient as well as the patient’s loved ones. This document contains information which aims to assist you in navigating this last stage of life.

Conversations surrounding End-of-life wishes

Conversations with your partner about end of life

Although this might likely be one of the most emotional and painful conversations which you will have with your spouse or partner, it will also provide comfort in knowing that there is a plan going forward and your wishes are known and will be honoured. The following topics are a good place to get the conversation started:

• When to stop cancer treatment
• Preparing for the future – Final Will and Testament
• Hospice and palliative care assistance
• Fears about death
• Wishes at end of life – Medical Proxy
• Funeral wishes

This conversation doesn’t need to be completed in one sitting and may most likely not be.

This conversation will be revisited regularly as your condition progresses and your needs change.

Sharing your diagnosis with your loved ones

Family and friends will react in a vast range of ways, be prepared for any of the following:

• Shock
• Confusion
• Helplessness
• Anger
• Sadness

Knowing what to expect may help you understand their feelings or reactions. Some relationships may change due to individuals having trouble coping with the thought of losing you.

Sharing your diagnosis can be done in a group setting or individually and largely depends on the type of relationships you have with your loved ones and what you are able to manage physically and psychologically.

In a group setting all questions can be answered in one sitting and electing a family member to speak onyour behalf may be helpful if you are not yet comfortable talking about your diagnosis.

In an individual setting you are able to have a more intimate conversation and may be reserved for your children and partner/spouse.

Palliative Care options available to the patient

Most often a combination of all/some of the options are used during the palliative phase as your needs and condition changes.

• Hospice – “the goal of hospice is to help patients live each day to the fullest by making then as comfortable and symptom-free as possible…They are dedicated to supporting the emotional, social, and spiritual needs of both patients and their families, as well as dealing with patients’ medical symptoms.” As stated by U.S. Department of Health and Human Sciences’ National Cancer Institute. Services offered by hospices are as follows:
  • Doctor services
  • Nursing care
  • Medical supplies and equipment
  • Drugs for managing cancer-related symptoms and pain
  • Short-term in-patient care
  • Homemaker and home health aide services
  • Respite services to give caretaker a break
  • Counseling
  • Social work service
  • Spiritual care
  • Bereavement(grief) counseling and support
• Homecare – the patient receives medication and specialised nursing/medical care at home. 24hour care is available and covered by most medical aids when motivated by the Oncologist/treating Doctor.
• Palliative treatment – Medicines and treatments used to treat cancer can also be used to reduce pain and other symptoms and help you feel more comfortable. Chemotherapy or surgery may be suggested to slow growth of the tumor causing pain or remove some of the tumor that may be pressing on nerves and causing pain.

Psychological wellbeing

Your emotional wellbeing may seem unimportant in-light of your physical health failing, but the opposite is true. It is possible to find joy in your life, even during this difficult season you are weathering. You will have many feelings after receiving a terminal diagnosis it is important to note that all your feelings are valid and that there are ways to work through them so that you are not held captive by them, these will be discussed below:

• Denial – having possibly put your all into treatment in hope for remission or recovery, acceptance that curative treatment is no longer an option can take time. Support groups or psychological therapy are two options which can assist in coming to terms with your mortality.
• Anger – after accepting your diagnosis it is normal to feel angry, to wonder “why me?” and be angry at:
  • The cancer
  • Your healthcare providers
  • Your healthy friends and family
  • And even God if you are religious

Talk with your friends and family about your feelings of anger, most often verbalising your feelings provides relief from them as you no longer need to carry them alone.

• Fear and worry – to mitigate paralysing fear it is advisable to empower yourself with knowledge from reliable sources, to help you prepare for any eventuality. Reliable sources are for example, CANSA website, your treating Oncologist and Hospice Organisation websites.
• Stress – you can learn coping strategies to help you handle your stress like:
  • Exercising – as is appropriate to your physical state (Yoga)
  • Listening to music
  • Reading books, poems, or magazines
  • Getting involved in hobbies such as music or crafts
  • Relaxing or meditating, such as lying down and slowly breathing in and out
  • Talking about your feelings with family and friends
  • See a social worker or psychologist
• Pain – there are many ways to control pain. As soon as you have pain you should let your doctor know, be honest about the amount of pain you are in, adequate pain control is an integral part of the palliative care process and will aid in bringing you comfort and enabling you to enjoy your daily life. Keep these guidelines in mind when describing your pain to your healthcare provider:
  • Where you feel pain
  • What it feels like (sharp, dull, throbbing, steady)
  • How strong the pain is
  • How long it lasts
  • What eases the pain and what makes it worse
  • What medicines you are taking for pain and how well it works
• Depression & sadness – many individuals feel sad or depressed when faced with their mortality. Treatment for depression can alleviate feelings of despair whilst still being able to feel and process the necessary emotions you are going through whilst still being able to find joy in your daily life with your loved ones.
• Guilt – many people feel guilty for various reasons, such as being a burden to others, lifestyle choices which could have led to your cancer. Discuss your feelings with your loved ones or ask to speak to a social worker or psychologist to work through these feelings.
• Loneliness – this could be due to friends and loved ones distancing themselves from you because of their own difficulty dealing with loosing you, or because you feel like your loved ones simply do not fully understand what you are going through. Support groups are a wonderful tool in discussing, working through feelings that you may experience which your loved ones may not be able to fully understand, or may not want to discuss with your loved ones.
• Gratitude – it may be hard at first, but you can find joy in your life. Do things that are meaningful to you and makes you smile. Pay attention to small day-to-day activities which bring you comfort and pleasure. Share these activities with your loved ones to enjoy joyous moments which will bring feelings of gratitude and happiness during this difficult chapter of your lives.

Talking to your healthcare team

These tips will assist you in getting the most out of your medical appointments,

• Make a list of questions before every appointment
• Bring a family member or trusted friend with to appointments. They will provide emotional support and may remember some information you may not remember
• Ask all your questions. If you do not understand keep asking until you do. Being well informed is empowering and can put many misconceptions to rest.
• Take notes. Ask a family member to assist you with this so that you can concentrate on asking your questions.
• Get contact details for follow up questions.
• Keep file or notebook of all the papers and test results. Take with to all your appointments and keep a diary of all your appointments and medications taken
• Keep record of any upsetting symptoms or side effects. Note when and where they occur.
• Find out what to do in an emergency, such as whom to call and where to go.

A check list for organising your affairs

• Make a list of where to find important documents in the event that you are unable to gather them yourself
• Keep documents in a fireproof box or with your lawyer
• If papers are kept in a safety deposit box, make sure that a trusted family member or friend has access to it
• Although original documents are needed for legal purposes, family members should have photocopies
• Advance directives to be finalised early on, this includes Living will and durable power of attorney and health care proxy

Nutrition

It is important to continue eating a well-balanced diet with keen focus on high energy, antioxidant, high fibre, and protein intake. Keep hydrated by drinking 1.5L to 2L of water daily. Closely follow instructions of your healthcare team and consult a dietician for clarity should you feel this would be of benefit to you.

Also, important to note is to eat and enjoy the foods that bring positive memories and make you happy. Enjoy your morning coffee as part of your routine, this brings a sense of normalcy to this unfamiliar chapter you are navigating.

As your disease progresses your nutritional and fluid intake needs will change. Due to a decrease in activity and slowing down of the body’s processes you will require less and less calories. It is not unusual to have little to no desire for food and drink, do not try to force yourself to eat this is expected and normal.

Celebrating your life together:

Examples:

• Make videos of special memories
• Review and arrange family photos
• Chart/write down your family history or family tree
• Keep a daily journal of feelings and experiences
• Make a scrapbook
• Write notes or letters to loved ones and children
• Read or write poetry
• Create artwork or jewellery
• Give meaningful items to objects to loved ones
• Write down or record funny or meaningful stories from the past
• Plant a garden
• Create a playlist of your favourite songs
• Gather favourite recipes and create a cookbook

For a comprehensive leaflet covering all of the above topics and more, kindly visit National Cancer Institute (U.S.) and read their information for patients, this is a brilliant source of reliable and easy to understand information covering an extensive number of topics pertaining to cancer.

Support groups are helpful to aid in connecting with individuals who are in the same position as you, some examples are:

• CANSA
• Cancer Dojo
• Cancer Buddies
• Cancer Alliance
• https://cansa.org.za/cansas-care-support/cansas-online-support-resources/

Important contacts:

• Centurion Hospice – 012 664 6175 – medadmin@centurionhospice.com

• Sungardens Hospice – 012 348 1934 – info@sungardens.org.za

• CANSA.org.za