Dying, and coping with death, are scary subjects and rarely discussed aloud in our society. But talking about them do open doors – and help with the grieving process.
Talking about Death and Dying
All of us are going to die – there are no exceptions. But talking to people who are about to die about dying is no easy thing. In fact, many prefer to sidestep the conversation. This major taboo, however good the reasons to keep to it are, have negative consequences that people should be aware of. The major one is that a patient’s right to be informed and to prepare for death is not properly considered.
Dr Oo Loo Chan from Charis Hospice tries to change things and to start this tough conversation.
Why is it important to talk about death?
The answer is simple: to facilitate living well and dying well. An atmosphere of see no dying, hear no dying, speak no dying certainly does not help. What we want to see is a good closure to a precious life.
If my team can help to relieve physical and emotional distress in our patients and families, we consider that a privilege. Often, emotional distress is due to factors beyond us and we can only offer listening ears. I believe a more open atmosphere in society to talk about frailty and incapacitation including dying before it happens can diffuse the tension. What are the patient’s wishes, what are the family’s wishes, what can medical treatment realistically do – these are but some questions we need to ask.
Has anyone ever hidden a patient's diagnosis from the patient?
Yes, you’d be surprised how often this happens. Last year, a registered nurse from the US volunteered with us. She was shocked that several patients whom she visited did not know about their terminal diagnosis, although they have received treatment for it.
Of course, there are a myriad reasons why family members hide a patient’s diagnosis from the patient – not wanting the patient to give up his or her fighting spirit is the main one. Also, talking about death is such a taboo in our society that the family does not know how to go about it.
But we must realise that hiding the diagnosis from the patient may not give him or her opportunity to prepare for good closure and this can cause some tension between the patient and their family as the communication may not be honest.
However, there are some patients who choose not to know; this needs to be respected, unless their not wanting to know is causing distress to the family or even subconscious distress to themselves.
How do you engage your patients and their families to talk about and prepare for death?
I try to sense how much or little they want to talk about death. It is never easy and may take more than one conversation. If they show interest in having that conversation by giving an opening, then I will seize it and proceed with sensitivity. I can’t be blunt simply because a patient wants to talk about death; the right opportunity is invaluable and I ensure the patient receives correct medical information.
But often, the right opportunity and time does not come along. Then my team has to create an opportunity to initiate this conversation – when we sense death is imminent and the patient and family are not prepared, or when there is discord in the family on goals of care.
Most of us are afraid when a loved one is about to enter the beyond. How can palliative care help the patient and the caregivers?
Family members and caregivers are concerned that death will be a painful experience for the patient. However, the time before death is generally peaceful. There is a gentle winding down that may take several days. The body starts to “let go” of life. If restlessness does occur, it can be treated.
Sometimes these signs appear a few hours before death, sometimes a few days. These physical signs are part of the normal, natural process of the person’s body gradually slowing down.
A dying person’s appetite and thirst may decrease, and they may have little desire to eat or drink. We have to reassure that the patient will not die of hunger, as the body systems are shutting down. Sips of water or a moist mouth swab will help them. Attempting to feed someone who is unable to swallow may distress them further.
Dr Oo Loo Chan.
An explanation of the changes is essential. When I explain these to the patient and the family, I avoid medical jargon and try to be sensitive to how much the patient/family wants or needs to know. And I will reinforce again and again that the goal is comfort care.
A small number of patients may experience more distress, either from more difficult-to-control symptoms or possibly from unresolved emotional issues. Or dying may occasionally be more prolonged. In cases like these, the emotional distress of the family is high. My team tries to keep in closer communication with the family. We will be available to answer their questions and render emotional support where possible.
How can a family realistically prepare for death?
Anyone who has cared for a patient with terminal illness knows that it is not an easy job. If it takes a village to care for a newborn, it takes a village too, to care for the dying. Being able to render some physical care, even if minimal, may help. It is best if the family can pull enough resources to care for the dying to help minimise tension and distress in the family.
Acceptance is a process that requires time, but a family must move on from shock and denial. Having open communication to facilitate good closure for both the patient and the family will also help the grief journey.
Of course, if dying and death are not a taboo topic and the family has talked about it before, the process may be easier.
What are the things to say – and not to say – to a patient?
Read what the patient already knows and wants to know, and go at his pace. Be as tactfully honest as possible. It is also useful to be mindful of family sentiments. Sometimes, the family has reservations about informing the patient. There is absolutely no harm in avoiding certain words – such as cancer, if there is much fear about cancer.
Hard as it may seem, the important information to communicate is that the patient is highly unlikely to recover and has limited time. Hope may be what keeps the patient moving on, but it is necessary to be realistic also.
You meet many people at the end of their lives. How has that changed you?
It is true that in my 12 years working at Charis Hospice, my team has walked with many patients and family members through this difficult journey. In recent years, as palliative care expands its scope, the journey can take more than a year.
A Charis Hospice nurse with a caregiver.
I am learning to see the big picture. Life is transient. Death will definitely follow birth, no matter how much we try to avoid it. We need to ponder on it if we are going to live the “in-between years” well. How can we move on in life and live as well as we can despite the physical and emotional pain of having a potentially incurable, life-threatening disease? That’s the constant challenge to our patients. I firmly believe that our society needs to become more comfortable about having conversations on death and dying.
I am also learning to see the smaller pictures – the little things that can be counted as blessings and give quality of life. A small gesture, like a kind word, a gentle touch and especially offering a pair of listening ears is therapeutic when we don’t have answers to another person’s emotional pain, but sometimes these are the most difficult to give when one is busy seeing to the relief of physical symptoms.
In offering palliative care, I am also learning – and hopefully, living – some basic tenets of palliative care: what constitutes quality of life, moving on in life and having good closure.
What can be done to get the community to be more open about death?
It definitely requires concerted efforts to change mindsets, but injecting the subject into public discourse helps to bring the topic to the table.
Medical professionals tend to tiptoe around the subject because it is so sensitive. A caregiver once confided to me that the oncologist who attended to her dying sister never brought up the subject. Hopefully, we can reduce discomfort among medical professionals to talk about death, too.
Learning about the process of dying is a good start to lessen the fear of death. When there is less to fear, then we can have a better closure to a precious life.
For further reading, visit www.palliativecare.my/download/category/9-aspect-7-about-the-processof-dying?download=5:about-theprocess-of-dying.
Coping with Grief
Bereavement is the time we spend adjusting to loss. There is no standard time limit and there is no right or wrong way to feel during the bereavement period – everyone must learn to cope in their own way. Grief, although normal, can manifest itself in a broad range of unexpected ways.1
Coping with a great loss is never easy.
For 44 days, new mothers in the Malay community go through their confinement with their newborn babies. But for Arfah Azmi, 29, she endured her confinement without a baby after losing her newborn child.
“I had complications delivering my first born, Thaqiff. He was not moving nor did he cry when he was delivered. The doctor said Thaqiff had nearly drowned.”
Immediately, Thaqiff was placed in the neonatal intensive care unit. But on the 12th day, he died.
“For nine months I carried Thaqiff in my womb. My husband and I couldn’t wait to meet our baby boy. We had everything bought and planned for him, from pacifiers to his crib to who would care for him. And to lose our baby after a nine-month wait, I was sad, angry and frustrated. I never knew it was possible for the world to just suddenly change colour; it was like I was wearing dark glasses all the time. I struggled to find joy in anything.
“It came to a point that I got jealous of other couples with babies. I felt that my happiness was robbed, so why should others feel happy? The saddest moment for me was when I packed up the things we bought for Thaqiff. To me, it was tragically pointless,” Arfah confesses.
Support from family and friends helped Arfah to slowly find her way back. “My husband and parents made sure I was never alone. Basically, they did anything and everything to prevent me from even thinking of grabbing a knife and slitting my wrist. They were afraid I might develop postpartum depression. I also got back to work as soon as my confinement period ended; getting busy with work definitely kept me going,” she continues.
As a Muslim, she believes in qadha and qadar. In Arabic the words qadha and qadar mean fate and destiny.
So when she met a pregnant unwed student looking for adopted parents for her unborn child, she knew it was destiny. The unborn baby needed a mother and she wanted a child. “This calling should not go unanswered,” she says.
“Muslims believe in rezeki anak (the luck of a child). A child brings fortune in many forms. A few years after adopting my daughter, I got pregnant. Elated as I was, I could not properly plan for this pregnancy because I was afraid I could lose my baby again. I knew I could only relax after holding my son in my arms, alive.”
In a bid to save the newborn's life, Thaqiff was placed in the neonatal intensive care unit.
Thankfully, Arfah delivered her second son, Zill Qayyim, safely, albeit through planned caesarean.
Although her family has grown since the passing of her first born, it does not mean that they have replaced Thaqiff. “Adopting Qiffa and having Zill has certainly helped me to find my purpose in life, but I will never get over losing Thaqiff,” she says.
According to Dr Lynne Yong, a consultant clinical psychologist from Penang Adventist Hospital, grief can take many forms and it affects one person differently from another. Some common reactions are loss of appetite, increase in risk taking, increased use of alcohol or drugs, withdrawal from friends, and anger towards God.
“Someone in bereavement can have all the signs of clinical depression. However, we do not diagnose someone as having a major depression unless their symptoms do not improve from week to week. If there is absolutely no progress, and they cannot function in terms of their job, taking care of their children, taking care of themselves, and they do not reach out to family or friends, and they talk about suicide, then he or she must get professional help.”
Arfah's family helped her to overcome her loss.
If someone has become frozen in grief – in that their grief remains as severe as when they first lost their loved one – it can develop into clinical depression which can bring a higher risk of suicide. “If someone has suicidal tendencies, the main thing is to establish safety. A typical counselling session involves getting a good history of the difficulties the client is facing. Subsequently, a psychologist will learn and potentially remind the client of their past coping skills and strengths, and support them in the healing process,” says Yong.
“We also teach them about depression and how to have good mental health hygiene. We help them understand their loss and come to terms with the changes in their lives. All this takes time. Typically, the first session is one to two hours and this is getting to know the patient. So it’s good if they go to a session with another family member who can give more information about the client,” Yong says.
Grieving is a natural process. In time, most people who are grieving will come to some level of acceptance and move on with their lives. But one must seek professional help if one’s symptoms do not improve. Clinical depression can cause much more suffering than a normal grieving process.
Exercising provided a positive healing outlet for Tony.
When Tony*, lost his wife of three years, Lisa*, to Burkitt Lymphoma, a complete darkness enveloped his world. “There is a finality to death that I cannot describe. She battled so hard with the disease and then suddenly she slipped into coma – one that she never came out of. She left without a parting word. I could not find closure,” Tony says.
“Although her death was somehow expected, I was still very shocked. I always thought there was still time. It felt like there was a vacuum in my heart that could never be filled. I was very lonely,” he admits. Still reeling from the shock of losing his wife, he had to put up a brave front and assumed his new role as a single parent to their then-two year old son, John*.
But Tony made a brave decision. “I knew I had to sort myself out first before I could be an effective parent to my son. My mom offered to help which turned out to be a blessing in disguise because at that point, I was not ready.
“The first few months after my wife’s passing, I was in a different level of confusion most of the time. I did some crazy stuff; I smoked and drank my sorrow away. Prior to losing Lisa, I was neither a smoker nor a drinker. I knew it was not a responsible choice but at that time, these vices gave me reprieve.
“Drinking put me in reckless situations. I was drunk driving. I was drunk by the roadside. In retrospect, I think I was really lucky to not get into trouble.”
When asked about his turning point, he says, “There was one time when I fell asleep by the roadside and woke up at midnight. I made a decision not to waste my life anymore. I could sit all day and dwell in self-pity until I was blue in the face, but that was not going to work.
Sports seemed to be the perfect avenue to channel his grief. “I was not a fit person to begin with. So, I thought, instead of drinking and smoking my life away, why not give swimming a try?”
Today, after a long bereavement process, Tony has moved on..
Swimming paved the way for Tony to create an active lifestyle, a positive way to cope with his grief. “I started running, and then I started doing Ironman sports. I kept pushing the limits until I reached the milestone I wanted. I spent 15-20 hours exercising weekly.”
Today, after a long bereavement process, Tony has moved on. He has now remarried and is rebuilding his life.
When asked about his advice to people who have suffered a terrible loss such as his, Tony says, “First and foremost, surround yourself with friends and family. Loneliness is very damning to the grieving process.
“Secondly, I think realising that grieving is a long process helps. It is OK to fail and it is OK to have negative emotions – we are human after all.
“Lastly, setting an achievable six-month goal is a great way to start. I think goal setting is important to keep your mind away from negative thoughts.”
*The names of the people discussed in this article have been changed to protect their identities.