With terminal disease, family communication is crucial

  • Family
  • Wednesday, 14 Jan 2015

Love and support: Pain and suffering should not be assumed as the norm in terminal disease. Much can be done to relieve pain and suffering — not just physical, but psychological and emotional pain as well. — TNS

Give the person who has a life-limiting disease such as cancer the dignity of making decisions for himself/herself.

Please don’t tell my mother what she has, as she may not be able to take the truth,” pleads a son.

In private, the mother has a word with me, just after the tests were done. “Please do not let them know that I have breast cancer. I don’t want them to worry that I know.”

This is pure anguish, what the mother and children are going through, and it leaves me with an aching heart. Everyone is putting on an act. The family is unable to communicate honestly and offer support to each other. The children definitely won’t be able to know the last wishes of the mother when death nears because they may continue to tell her that everything is fine.

This is physically, emotionally and psychologically draining to the person who is being ferried around for tests, and has to undergo painful treatment.

Are we doing justice when we withhold the truth from patients? They may guess and fear the worst, but they dare not ask about their diagnosis because they are aware that family members don’t want them to know.

Those with life-limiting illnesses have a right to decide how they want to live their remaining days. It gives them time to complete whatever they want to do and say.

Over lunch, I asked a friend his thoughts of dying with dignity. “MONEY!” was the answer. “People should have enough money so that they can call the shots on how they want to die, how extensive the treatment, and even funeral arrangements.

“If they are old folks, this will ensure the children don’t squabble over treatment or funeral expenses, resulting in division of the family. Instead, allow the loved ones to rally round the one who has a life-limiting illness. That, to me, is going with dignity.”

The late Morris Schwartz, who was the subject of a book, Tuesdays With Morrie by Mitch Albom, was a sociology professor, and he even went to the extent of having a “living” memorial service so that he could hear what his friends and family would say.

Morrie had been diagnosed with a neurodegenerative disease in 1994 and passed away in 1995. Morrie believed in living whilst dying, and taught his final lesson through the book that Albom eventually wrote.

What points am I trying to make here?

1. Autonomy. Give the person who has a life-limiting disease such as cancer the dignity of making decisions for himself/herself, or at least, it should be a shared decision.

Do break the news gently or in progressive steps. Dying with dignity should be the standard rather than a privilege.

2. Seek palliative care/medicine in parallel, and not just when the loved one or you have only days left.

Much can be done to improve quality of life, and in fact, may enable longer and better quality end of life. In other words, improve the quality of dying.

Pain and suffering should not be assumed as the norm. Much can be done to relieve pain and suffering – not just physical, but psychological and emotional pain, which may be worse than physical pain.

Palliative care/medicine is becoming more mainstream in Malaysia in public hospitals and also through NGOs such as Hospis Malaysia, Hospice Klang and Palliative Care Association Kota Kinabalu.

3. Advanced care plan. For many who are still active and “well” at the point of diagnosis, do whatever is necessary to ensure your wishes are clearly conveyed to your loved ones and potential caregivers.

It helps not to have to second-guess what your family really wants or feels. Closure is important for people to “leave” peacefully.

Consider an advanced care plan – share it with family or a person designated to be “executor” so that when one reaches the point where one is considered “no longer of sound mind”, our wishes can be carried out.

We may also wish to put relationships right or shore up on our spiritual needs.

4. Speak about death openly, like attending a Death Café. The Death Cafe is spreading throughout Europe, North America, Australasia and Hong Kong. The objective of the Death Café is “to increase awareness of death with a view to helping people make the most of their lives”.

People gather over cake and tea to talk about death and dying, bringing a taboo subject into the open. This is not a grief support group. Someone may gather insight as to how to communicate with his father who is dying or what to say to friends who have been diagnosed with cancer.

The Death Café was founded by Jon Underwood and he held the first Death Café in September 2011 in UK. There is a guide to running your own Death Café, and this can be found at deathcafe.com.

This article is not about judging what is right or wrong, but to create awareness about end-of-life planning.

How do you want to be remembered? Should we not start living our life the way we want to be remembered? After all, the next sure thing after birth is death. Sometimes, there will be situations of sudden death, such as accidents, which we have no control over.

As the population ages, and more people are living longer, ageing well is increasingly important, but so is dying well, or at least, as well as we can when given the opportunity to.

Just like the way you plan for holidays, plan for dying too!

This article is contributed by The Star Health & Ageing Panel, which comprises a group of panellists who are not just opinion leaders in their respective fields of medical expertise, but have wide experience in medical health education for the public. The members of the panel include: Datuk Prof Dr Tan Hui Meng, consultant urologist; Dr Yap Piang Kian, consultant endocrinologist; Datuk Dr Azhari Rosman, consultant cardiologist; A/Prof Dr Philip Poi, consultant geriatrician; Dr Hew Fen Lee, consultant endocrinologist; Prof Dr Low Wah Yun, psychologist; Datuk Dr Nor Ashikin Mokhtar, consultant obstetrician and gynaecologist; Dr Lee Moon Keen, consultant neurologist; Dr Ting Hoon Chin, consultant dermatologist; Prof Khoo Ee Ming, primary care physician; Dr Ng Soo Chin, consultant haematologist. For more information, e-mail starhealth@thestar.com.my. The Star Health & Ageing Advisory Panel provides this information for educational and communication purposes only and it should not be construed as personal medical advice. Information published in this article is not intended to replace, supplant or augment a consultation with a health professional regarding the reader’s own medical care. The Star Health & Ageing Advisory Panel disclaims any and all liability for injury or other damages that could result from use of the information obtained from this article.

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