Denial

It’s normal to feel lost and confused when you first get news that someone close to you has a terminal illness. You may feel all kinds of emotions and not be able to control them. The first task is to digest the news and make sense of it. It’s difficult and it takes time. Stop and reflect, think about your questions, and look for information before you do anything or make any decisions.

A good way to start is to reach out to people and services related to palliative care. It’s best to know what’s available and make contacts before there’s a crisis or a major change in your dad’s condition. Your father will have a health care team or a palliative care team to help support him and you. These health care providers can help you and the rest of your family deal with the emotions and the changes to come. If you think you’d like to talk to someone about this, don’t hesitate to ask.

It’s normal also to not know what to say. In society generally, there’s discomfort with talk about death and dying. Many people have never faced it nor had to care for someone who is dying. We have so little experience with death that most of us are afraid of saying or doing the wrong thing. Usually we say nothing and try to avoid the whole situation. Open communication helps everyone. You’ll realize that you share similar emotions and questions, and together you can ease fears, find answers to questions and reach out to health care providers for help.

It’s common that people with progressive illnesses want to avoid certain facts. It’s especially common if they’re not responding to treatment or if their health is declining. In your grandmother’s case she may be ignoring her situation because she can’t cope, or she may be saying what she thinks her health care providers want to hear.

It can be difficult and frustrating to support a loved one who isn’t facing reality. It’s common to feel helpless; you don’t want to take away hope, but you do want to deal with the issues that come up when someone is terminally ill. It’s best to be upfront with your grandmother. This is a good approach generally, but in this case there are additional reasons.

A physician has an obligation to be open with a patient about all aspects of care. It’s essential to establishing trust between the physician and patient, which is the basis for care. Physicians feel uncomfortable having conversations with family or friends behind a patient’s back. The physician is in an awkward spot if there’s new information from a source that can’t be revealed. If your grandmother senses this has happened, it could erode the trust she needs to have in her physician. Of course, if she faces a physical risk somehow, then this needs to be considered.

Trust is important also between a person who’s ill and family and friends. A person with a terminal illness is vulnerable and needs to feel safe. Like others who are ill, your grandmother needs independence, dignity, and a role in the family as much as possible. If your grandmother senses that people are talking to her physician without telling her, it can diminish her dignity, her respect for others, and decrease her sense of control over her own life. Such conversations are meant to be confidential, but one way or another they usually end up getting back to the person who’s ill. Lost trust is not easily regained.

You may be worried that by not being upfront with her physician your grandmother is missing out on important treatment options. Be assured that if your grandmother has significant health issues they will be evident anyway. Such issues are hard to hide or ignore. Her physician likely will be aware of them, and aware also of the common desire to put up a good front. Your grandmother’s physician may not want to address this explicitly, and may be trying to find a way to gently let your grandmother know that her health is deteriorating in the midst of few treatment options.

It’s important to be open with your grandmother. Tell her you’re concerned that she’s not telling her physician what’s really happening. Consider asking her permission to come along when she visits her physician, so that you can ask questions. Alternatively, you can ask permission to phone the physician yourself. The physician would then check back with your grandmother.

Your grandmother has to approach her situation in her own way, and that may change with time. Still, it can be hard on you and others around her. Consider telling her how you’re feeling. If you’re open, it may help her open up also.

Most palliative care programs require people to accept that the programs offer a comfort-focused approach to care rather than efforts to cure the underlying illness. This is hard for many people to accept. Even if deep down they are aware of their situation, it’s hard to let go of hope for a cure.

This can be frustrating and upsetting for others, but people with life-threatening illnesses need the time and space to find their own approach. They also need support in whatever form they will accept. As the burden of illness becomes heavier, the reality of the situation becomes harder to deny. This usually brings a gradual shift toward accepting support.

It may help to ask your husband why he’s refusing palliative care. His refusal may be based on misconceptions. Many people, even some healthcare providers, believe palliative care equals no care. Unfortunately, this often is how palliative care is raised. Your husband may believe that nothing will be done for him. This is not true. Palliative care is very active care, with a clear focus on comfort, including symptom management, and quality of life.

Even if your husband never lets go of the hope for a cure, or may never even acknowledge his illness, palliative care can offer the best possible quality of life. In such circumstances, people working in palliative care are presented as healthcare providers who can help manage his symptoms, such as pain or nausea.

Your husband’s healthcare providers need to spend time discussing your husband’s concerns, what he can expect, and realistic options for treatment and management of symptoms. It’s hard to tell someone that there are no options left that could change the progression of an illness. Yet, this is far from saying "there’s nothing more we can do". Palliative care offers much that can and will be done, although with different goals. Your husband may need reassurance that no one is giving up on him.