Communication with Terminally Ill Patients

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Communication isn’t an uncommon topic to everyone.  In fact, in all aspects of our lives, communication plays an important role in expressing our wants and our needs so much so that in education, much emphasis has been placed in teaching and helping  students to acquire the skills of good communication in various situations.

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Adapted from http://greater-carpenters.co.uk/

Therefore, when it comes to reaching out to terminally-ill patients, what defines “communication”? This was the first question posed to everyone at the beginning of the training. “Is it a two- way conversation?” or “Is it an art?” Is it a medium that helps people to understand each other? A process which includes talking, listening and talking or is it a form of body language?

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Adapted from https://thegatewayonline.ca

None of the answers given above are wrong. There is no fixed definition explaining “communication” as it is subjective to everyone, and the way we communicate depends on the situation and who we are dealing with.  In other words, communication styles could change due to environmental influences and what we want to achieve.

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Before I was introduced to this training, my understanding towards communication was,  it is just a platform to connect two unique individuals to achieve a mutual understanding.  It also helps me to transform an individual’s thoughts and opinions into words or to persuade others to share my own thoughts and beliefs. However, communication is not just being effective but it is also affective.

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Adapted from http://i2.cdn.turner.com/

Many a times the communication process can break down easily because we often overestimate with our abilities and underestimate what’s beyond our control.   We may also focus too much on trying to get our own message across that we forget to take time to listen, understand and absorp what the other party is trying to communicate to us.  Dr. Rebecca Coles-Gales explained “communication” is a life-long learning to every one of us. We are making mistake every day, consciously or unconsciously. Since communication skill is a long-term process to us, we should learn to converse the message and putting the wrong back to the right path, rather than always focusing on how to provide the right conversation.

Optimizing the Five Senses

The training on communication with palliative care patients reflected the notion that communication isn’t simply defined by a channel or a pathway to patient and Health Profession.    It made me delve deeper into the meaning of communication and I realized that communication comprises different elements. Good communication is not just to be effective but it is affective as well which requires the optimizing of the 5 senses in our body, which are:

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Adapted from https://eugenecho.files.wordpress.com

1) The eye. To observe patient’s face expression and response, eye contact to show you are keen to listen to their stories and you are always there to help them.

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Adapted from http://images.medicaldaily.com/

2) The nose. First time ever to encounter the sense of smell could aid good communication? Yes! It did. The sense of smell helps you to acknowledge the patient’s condition and the environment they are living in, whether they are comfortable and clean. Do remember, hygiene plays an important role in the process of patient’s recovery. When they are clean and comfortable, it reflects they are being attended with care and it will make them feel one step closer to a comfortable life.

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3) The ears, not just to listen. Active listening is a skill that goes together with observation skill during conversation. Listening can be easy in daily conversations, but when it comes to working with terminally ill patients who have difficulties in expressing or communicating, offering time, patience, attention and understanding  are skills which require more than just listening. We are required to observe the non-verbal language and what is not been said.

“LISTENS” mean:

L = Language (Words of using could affect those who listen to you)

I = Self, I (The value of yourself will begin when you present and how other feels about you. Does patient trust you?)

S = Speed (Speed of your voice tone has to be firm on delivering of proper message to the patient)

T = Tone (Sometimes it’s not about what you say but it’s all about how you say)

E = Empathy (Putting yourself into other party shoes)

N = Non- verbal (Be aware of the body language/non-verbal cues)

S = Silence (How long can you be silent and when you should be silent) or Synergy (To meet the mutual understanding)

Adapted from http://media.npr.org/

Adapted from http://media.npr.org/

4) To touch with your hands. Physical contact (appropriate) show much support than saying a million words such as a pat on the back or holding the patient’s hands. Presence is important but in certain situations, presence with silence is helpful in comforting patient’s worries and frustrations.

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5) The mouth. It is where you need to response or to clarify what you receive by using your sense. It’s all about asking the right questions and using the right terms. When you are able to reach the “Aha” moment then it is much easier to solve the patient’s worries and problems.

Ways to Connect with Patients

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Adapted from http://www.automotive-fleet.com/

Part of good communication is to connect with the patients.  There are many skills of communication that can be used with palliative care patients:

1) Verbal communication – the traditional skill of communication.
2) Nonverbal symbolic language such as drawing or play therapy – For those patients having difficulties in expressing thoughts or are unwilling to share their emotions. Arts and toys are one of the best tool kits to encourage safe expressions of feelings.
3) “Monologue Dialogue” is a technique used by health professions to anticipate patients’ questions and they could response with a word of yes or no. Sometimes, the monologue dialogue could help patients to have a deeper understanding of their thoughts, worries and feeling.
4) What about patients who don’t speak any language or speech deficiency? Music! – Music is a universal language and it acts as a great form of stimulation. Health care providers can use music to aid stroke patients who aren’t able to talk; semi-comatose or comatose patient.

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Adapted from https://i.ytimg.com

Understanding Palliative Care

When the word “Palliative” crosses your mind, what do you think about that? Is that a dying patient? Or is it an incurable disease? Often people associate it with End-of-Life, which we termed it as Hospis Care, including me! Palliative care is a special care to focus on providing relief symptoms, pain and stress of serious illnesses such as CANCER, Congestive Heart Failure (Failure of the heart to adequately meet the needs for other organs and tissues for oxygen and nutrients), Chronic Obstructive Pulmonary Disease (A disease that makes the patient hard to breathe, progressive means the disease get worse over time, mainly due to heavy smoking habits, long term exposure to air pollution, chemical fumes or dust), Kidney Disease, Alzheimer’s, Parkinson’s, Amyotrophic Lateral Sclerosis (A progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, or neurons responsible for controlling voluntary muscles) and many more diseases. Palliative care teams work to provide the best possible quality of life.  It covers from physical to emotional care, and to social ability; empowering the suffering patient, families and their loved ones to live the fullest possible life RIGHT NOW.

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Adapted from https://www.signup4.net

Most of the time we have difficulties telling patients how ill they are, but for me, I find it rather challenging to continue with the conversation after patients have received their newly diagnosed disease (for example stage X cancer, positive HIV test etc.). According to Elisaberth Kubler-Ross on her “five-stages of grief” in 1969, patients go through different feelings before they reach to the stage to accept the truth of the illness. The stages are “Denial”, “Anger”, “Bargaining”, “Depression” and last “Acceptance”. Therefore, it is likely to anticipate certain responses from patients such as swelling and tearing; shock and denial or anger; silence and rejection. It is much easier for the physician or health care team to assist those patients when they have already understood what is going on and what is going to happen.

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Denial is always the first line of defense. It is an unconscious defense mechanism that is used to reduce anxiety by denying thoughts, feelings or facts that are consciously intolerable. Patients would either prepare themselves knowing symptoms from their body or they are unprepared to accept the truth of their disease when they are completely unaware of the result. Hence, the duration and response of each stage depends on individuality and severity of disease.

There is one common question asked by most patients “why me?” We are all human.  Humans will need to go through death. It is part and parcel of life and it will happen to anyone of us sooner or later. In the book of death and dying by Elisaberth Kubler-Ross, one way to response on this question is to be honest and to say “I don’t know why you” but follow up with “Why not you?” (It is true that we wouldn’t know why and when a person will die since everyone of us has to face death). The author explained the question “why me?” has its underlying meaning, and most of the time it refers to “Why Is It on me now?” The rhetorical question “Why not you?” will lead patient to express more on their feelings, anger, anguish and helps to ventilate all their concern and worries. There is neither a fixed statement nor guidelines on what to ask and counsel palliative patients. The only way you could “dig out” more details is through talking, listening and understanding their needs, then we are able to aid them as they walk through the dark.

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Adapted from http://vanessa-coppes.com/

*Hospice care specialized in medical care which includes medicine, treatment to manage symptoms, control side effects and give comfort towards the end of your life. Hospice care look after on your physical, emotional, social and spiritual needs until the end of your life.

*Palliative care is not hospice care but it is a part of hospice care during the treatment phase.

References:

Michael J. Formica, MS, MA, EdM. Understanding Palliative Care (2011). Retrieved from https://www.psychologytoday.com/sites/default/files/attachments/522/understanding-palliative-care.pdf

Kubler-Ross, Elisabeth. (1979). Questions And Answer On Death And Dying. New York: Macmillan Publishing Co., Inc.

 Facilitators:

Dr Rebecca Coles-Gale.

Clinical & Health Psychologist (CPsychol)

Dr. Sylvia A McCarthy

Medical Director

Hospis Malaysia

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