Being told that you or a loved one has a chronic and incurable illness can be overwhelming. When someone is diagnosed with a serious illness, everyone (including the person and their loved ones) reacts differently and experiences a fluctuating range of emotions that may go on for several months. Below are some of the emotions that may emerge and suggestions on how to cope with them.
Shock and denial
The news may be so difficult to hear that it sparks disbelief. Shock is a short-lived phase that leaves a person feeling emotionally numb and unresponsive to something that is upsetting. Denial is the refusal to accept the reality of the situation. It is a defense mechanism that shields us from feeling too distressed.
What can you do?
- Listen – just listen!
- Accept their reactions without judging
- Do not challenge their reaction; do not rush them back to reality too quickly
Anger
When anger sets in, it is not uncommon for it to be directed at others. Anger can be expressed as verbal outbursts (e.g., cursing, hurtful words, blame, etc.) or nonverbally (e.g., accusatory looks, abrupt movements, etc.). Anger can be particularly difficult for everyone involved.
What can you do?
- Encourage the expression of negative emotions
- Stay as calm as possible
- Avoid defensive or aggressive reactions
- Prevent negative repercussions for all involved by helping the person refrain from going too far and crossing the line
Bargaining
Bargaining involves constantly imagining different scenarios. It is also a form of negotiation with God or other higher power. For example: “If you…, I will/ I promise to…”.
What can you do?
- Hope the situation resolves
- Avoid feeding false hope
- Encourage and participate in efforts to set realistic goals
Sadness
Sadness can take up a significant amount of space in the person’s life, engulfing them in grief.
What can you do?
- Be there for the person and listen
- Respect their need to cry
- Show the person who is sad how important they are to you
Resignation and acceptance
Resignation is surrendering to what is and giving up the fight. Over time, the person becomes a little more accepting of the loss. They begin to feel a little better and the future does not look quite as bleak.
What can you do?
- Be a good listener
- Encourage and participate in setting realistic goals
- Highlight the person’s qualities and achievements
Everyone experiences a range of emotions that is unique to them, regardless of the order in which they occur, and adapts as best they can and at their own pace. Respecting each person’s journey however, is what is most important. In terms of providing support, being a good listener and being authentic can go a long way.
Children and Teens
Speaking to a child or teen about a family member’s serious illness can be daunting. Since they can sense when something is wrong within the family, it is difficult to hide our feelings from them. Shielding them from the truth will only serve to worry them. Children are able to cope with difficult situations when they are well informed. You can also ask for the support of your healthcare team or the specialized palliative care team as they are well versed in initiating these difficult conversations.
And What About Palliative Care?
The focus of palliative care is to help patients and their loved ones by:
- Helping them cope with physical concerns: management of pain or other symptoms
- Offering psychological, social and spiritual support (dealing with loss, sadness, grieving)
- Helping them better understand the illness and its progression
- Talking to them about expectations, hopes and choices for care
Members of the Care Team
Patients and their loved ones will benefit from the support of a range of health professionals throughout their journey. The composition of the healthcare team may vary based on your needs and the setting in which you are receiving care. To help situate you, here is an overview of the role of each team member:
Orderlies, also known by their French acronym “PAB” (in healthcare facilities) and health and social services assistants (home care)
See to the patients’ comfort by assisting with personal care: personal hygiene, mouth care, help with dressing, etc.
Nursing staff
Nurses, who are often in charge, assess the patients’ state of health, identify and provide care and treatments. Licensed practical nurses are also involved in the delivery of care.
Psychosocial workers (social workers, psychologists)
Help individuals adapt to the illness and provide information on available resources.
Physicians
Responsible for diagnosing and treating problems.
Pharmacists
Provide expert information on medications and can advise on dosage, contraindications, side effects and drug interaction management.
Rehabilitation therapists (occupational therapists, physiotherapists)
Focus on offsetting any loss of independence, preventing falls, reducing fatigue, improving comfort and preventing sores.
Spiritual counsellors
Offer high-quality and judgement-free spiritual support that is based on listening and compassion.
Music therapists, massage therapists, animal therapists
Offer an enjoyable and focussed experience to ease physical, emotional and spiritual pain.
Volunteers
Offer a comforting and reassuring presence for patients and provide respite for loved ones who need it.
Respiratory therapists
Use their cardiopulmonary expertise to ease discomfort associated with respiratory issues.
Nutritionists
Optimize nutrient intake to help patients maintain their physical strength, improve digestive symptoms and treatment tolerance.
Advance Care Planning
Advance care planning is a process of reflection and communication. It is a time for you to reflect on your values and wishes, and to let people know what kind of health and personal care you would want in the future if you were unable to speak for yourself.
Think about what is most important to you – your values, wishes and beliefs.
Learn about your overall health.
Decide on your substitute decision maker(s), one or more people who are willing and able to speak for you if you cannot speak for yourself.
Talk about your values, beliefs and wishes with your substitute decision maker(s), loved ones and healthcare providers.
Record your values, wishes and beliefs.
For more on advance care planning, refer to this site: https://www.advancecareplanning.ca/.
Several Ways for You to Record Your Wishes
- Communicate your wishes to your loved ones verbally.
- An advance medical directive.
- The Level of Care form identifies the goals of care to help guide diagnostic and therapeutic interventions following a discussion with the physician (in certain situations it is a good idea to place it in full view of the first responders). Do not be shy to talk about this with the care team.
- A power of attorney gives a person the power to act on your behalf while you are mentally capable. It only covers the management of your finances, property and affairs.
- A protection mandate or a mandate in case of incapacity allows you to designate the person who will take care of you and your property should you be declared incapacitated.
- A will allows for the division of your assets after your death. It can be notarized or written by you (ideally in the presence of non-beneficiary witnesses of legal age). It is best to look into the advantages and disadvantages of each.
Tools and Resources
Tools
- A GUIDE FOR PATIENTS AND THEIR LOVED ONES - Serious Illness
- A GUIDE FOR PATIENTS AND THEIR LOVED ONES - Serious Illness (print version)
- Printing instructions:
- Select double-sided (or duplex) printing;
- Flip on short edge.
- Printing instructions:
Resources
| ♦ Notice to reader: The resources listed are provided for information purposes only to help bereaved and grieving individuals access community resources available to the public. The use of these services is at your discretion. The institution cannot be held responsible for services provided by the resources listed. |