Anxiety

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.

When patients are uncomfortable or in distress, even though their physical symptoms are well controlled, they may be experiencing spiritual pain. Spiritual pain is often experienced in the midst of a life-limiting illness and is “a great mimicker, often presenting as physical pain, anxiety or depression, anorexia, insomnia or shortness of breath.”[1] It may stem from troubled feelings, thoughts or relationships. Because spiritual pain is often expressed in physical or behavioural ways, it can be difficult to diagnose. As Kearney and Mount note, the recognition of spiritual pain is often more intuitive than empirical. “We instinctively begin to use words like ‘suffering,’ ‘anguished,’ and ‘tortured,’ rather than a more orthodox, scientific terminology.”[2]

Any of the following may point toward spiritual pain in the hospice setting [3]:

• constant and chronic pain;
• withdrawal or isolation from spiritual support systems;
• conflict with family members, friends or support staff;
• anxiety, fear or mistrust of family, physicians and hospice staff;
• anger;
• depression;
• self-loathing;
• hopelessness;
• feelings of failure regarding one’s life;
• lack of sense of humour;
• inability to forgive;
• despair; and
• fear or dread.
  

These indicators and symptoms are related to the patient’s awareness of death and the struggles growing out of that awareness – struggles with losses of relationships, self, purpose and control.[4] Spiritual pain and suffering develop from the patient’s sense of helplessness as his illness diminishes or destroys what is meaningful in his life. Relief can only be found if the spiritual struggles at the heart of spiritual pain are addressed.

The relief of spiritual pain requires paying attention to the patient as a person. This involves looking beyond physical symptoms and medical treatments to the impact the illness and treatment is having on the person. Check on how your patient is coping with his situation. Begin by saying that people with his type of illness often have questions or worries about what is happening or what might happen in the future. You could follow this up by asking him if he has such questions or concerns. You might try a less directive approach by asking him what he thinks about when he goes to bed at night. If your patient is hesitant to open up about how he is experiencing his illness, you could let him know that if at any time he has questions or concerns, he can direct them to you or other team members. Assure him that you will do your best to get him the answers or support he needs.

If your patient does not respond to invitations to share how he is doing and continues to be agitated, anxious or panicky, you might need to be more direct in your approach. You could inform him that the team believes his agitation and anxiety may be related to the struggles he is having as a result of his illness. Health care professionals should exercise caution in not making him feel like he is pretending or that his pain is all in his head. One way to gently approach this topic is to say that suffering is never strictly physical but has an emotional or spiritual component, and that his health care team is just trying to get at the root of his distress. This might lead to a discussion about who might be best suited for talking with him about his suffering – a community spiritual leader he knows, a spiritual care provider on the team or another team member, a hospice volunteer, or a close and wise friend.

Determining the cause of spiritual pain is not easy, and eliminating it is not the goal. Spiritual pain is part of being human – it is how we deal with our mortality and limitations, respond to shattered expectations, and search for meaning in life and death. With spiritual pain comes a chance for growth and sometimes for transformation. As a health care professional, you can help patients embrace these opportunities by focusing on them as people. Invite them to share their questions and worries, and listen respectfully and attentively. By doing so, you can help them find the resources they need to make this season of life meaningful, and assure them that they are not alone and will not be abandoned.

References

1. Doyle D. Spiritual care: can we teach it? HKSPM Newsletter 2004;1:4-6.

2. Kearney M, Mount B. Spiritual care of the dying patient. In: Chochinov M, Breitbart W, eds. Handbook of Psychiatry in Palliative Medicine. New York, NY: Oxford University Press; 2000:357-373.

3. Hay MW. Principles in building spiritual assessment tools. Am J Hosp Care. 1989;6(5):25-31.

Other reference

Millspaugh CD. Assessment and response to spiritual pain: part I. J Palliat Med. 2005;(8)5:919-923.