Dignity in Transition

Requiescat in Pace ("Rest in Peace")

Peace is the state that lightens our ultimate passing and helps us transition with ease and grace, as opposed to fear and opposition. Yet people who have been told they are going to die do not often feel that gentle emotion.

I have known many people who have been told they are terminally ill. Perhaps someone close to you has been given this advice. Perhaps that person has been you. That message, however gently delivered, is like an assault, and the natural response is to go into a state of numbness and fear. Once that emotion starts to become absorbed and accepted, the next question is, what am I meant to do now?

Although I know logically that we will all die, I have tried putting myself in the position of personally receiving the news of a terminal illness many times. I think that unless you have that message thrust upon you, the emotion of what it would feel like is unattainable.

The first time I was faced with this thought, I was working as a volunteer palliative carer with natural therapy and speaking with a client named Mary after she had been given this very news by her doctor. She voiced that sentiment, almost in a state of trance. "What am I supposed to do now?"

I know I can't answer that. However, I can help.

At no point would I ever tell anyone what he or she has to do. Not only is it not my place to, but it is also not my journey. At all times, I know I must honour the journey of others, whether in life or in death. I didn't tell Mary what to do, but we did talk, and as we talked, I began to understand where her thinking was. I did the only thing I could. I offered her the love that was being sought.

Being in this frame of mind always makes it easier to extend help, and it is humbling if you are sincere. You need to be honest, truthful, loving, and compassionate. That is the kind of support everyone is looking for. A terminal diagnosis signals the start of a new journey, and it is important to make a person feel that it is okay to make the choices and decisions that are right for them, even if those decisions are hard. Doing this can help them more easily reach a state of peace within themselves.

Over many years in this field, I have heard beautiful stories. These helped me to see what people needed and what they wanted to do to fulfil their journeys and gain their peace. Such stories are beyond price. Sharing this information not only allowed each of these people to openly think about and discuss their thoughts, feelings, and ideas with an impartial source, but also, I hope, will help anyone reading this to better understand or come to terms with their own situations.

Understanding the Dying Person's Needs

Many people want to die at home. It does not matter if they are suffering from dementia or are at the stage of needing palliative care. What I hear over and over again is so many want to die at home. Of course, each individual situation will be different, and it will not always be possible for someone to see out his or her last days at home in a familiar environment for a host of reasons. It would be wonderful to think that we had enough trained volunteers who could work with families at home or hospital, as this would help the doctors and greatly assist palliative units. I believe that with these extra human resources, more people would be able to experience that peaceful transition with dignity. The most important thing to find out is exactly what the patient wants and then work with the resources available to provide his or her last wishes as best you can.

For the dying person, the thought of having to be parted from loved ones and home to enter a foreign environment can be overwhelming, to say the least. When speaking with people who know they are at the palliative stage of their lives, it is often possible to feel their fear. At this stage, they can be super spiritually sensitive. They may have experienced astral travel and have an understanding of what it feels like to be away from their physical bodies. Some people I have cared for have even commented on the people they have been communicating with outside their bodies.

Dying people often have heightened senses of what each person around them is feeling and seem to know who would, and would not, be able to cope with the situation as they ready themselves to depart their bodies. They also have an awareness of whether family members would be able to cope with them dying at home.

It is difficult for adults to come to terms with being told they are dying. They have accumulated years of experiences and friends, and a vast majority of people have their own families. Most have assets and tangible material possessions, which can be hard to let go of, especially if they have worked tirelessly to get them in the first place. Some realise that the things they had planned to do when they had the time or money will now never eventuate, and this can lead to a tangle of emotions. Regret, frustration, anger, and guilt are all very common. Even if we are aware that enjoying material items can be short-lived, coming to terms with this whilst facing a terminal condition can be devastating. I believe we should enjoy material things as a gift but be prepared in the back of our minds to just let them go. The more we emotionally hang on to possessions, the harder it will be to let go when it comes time to pass over.

As can be imagined, children who are terminally ill most often want to be at home; however, for a host of reasons, this is not always possible. Largely this will be because treatment is ongoing, or possibly that it's far too difficult and emotional for family members to deal with.

In each instant, ask your loved one what they want and do all you can to achieve that.

Fear

If ever you have the humble privilege to work with a dying person, facing your own fears will definitely help you develop compassion towards them. The dying person often goes through a multitude of fears: fear of dying in pain, fear of suffering, fear of losing control and respect, fear of indignity, and the biggest one I see, fear itself. All of these emotions are perfectly normal. If a dying person knows a compassionate, caring person is working with him or her, the security of not feeling alone can support him or her to transit with dignity and peace.

The calmer you are around a dying person, the more you will develop a sensitivity towards his or her feelings. This energy transfers to the dying person and supports him or her to transit with peace and dignity. Today people who know they have a terminal illness do not have to die in pain. Fortunately, those days are gone.

I was working with a cancer client who had been ill for years. He was scared of dying and was prepared to put up with whatever pain it took to stay. Whilst working with this person for several weeks, a trusting relationship developed, and we had many hours of discussion about his fears. As our visits together progressed, my intuition hinted that I should have a conversation with him about dying.

The next time I saw him, I held his hands in mine and had the most overwhelming feeling that I needed to make eye contact. As we looked at each other, a kind of quantum no-time-or-space, sincere, loving, peaceful feeling came over me. I asked, "Are you afraid to die?" He replied, "No, of course not."

But, that was not the feeling that emanated from him. I told him not to be afraid, and again I asked the question. This time, his answer was "Yes, yes, I am." He then told me that he was scared of the pain he might endure. I advised him not to be afraid and to speak with his doctor about support for the pain, and I urged him to tell his doctor when he felt ready to die.

That is exactly what happened. The next day, he happily showed me the help he was being given. He was able to die peacefully and, I must say, with dignity.

Coping

Consider the dying people in this situation. They rely very much on the love and support of the family. Although grieving themselves, they know that they cannot do this on their own. Being at home can put some sort of normality into an unfamiliar situation. On the other side, you have the family. They love this person very much but have no idea what is in store, from many angles. Nor do most people understand the enormity of the commitment to nurse a loved one at home, both physically and emotionally.

Death is not something spoken about in every day conversation. When faced with the real thing, not only does the fear of dying become unavoidable, but also the grieving process begins for everyone. If you can imagine the dying person grieving and the family grieving, both in different ways at the same time, the situation becomes a minefield of emotions. The imagination goes wild.

Our culture is taught to think with a positive attitude, and rightly so, but it is very difficult if family members don't accept the situation. They become adamant, denying that their loved one may die. What tends to happen is that if family cannot accept, time starts to run out. All of a sudden they are told their loved one is about to die. The family fall heavily in a heap. I have been with people who, in the most vital time of the dying loved one's life, see pandemonium, anger, denial, and arguments erupt. Throughout my years of dealing with death and dying, I have felt that there is not enough education or support for the family members trying to get their minds around the horrible news and then to understand and deal with what is required for them to get through such a heart-wrenching ordeal.

Dying at Home

Once a person is informed that they are terminally ill and, there is nothing more that doctors can do to help them, many choose to cease all treatment. From my own personal experience, that of my mentors and peers, and what I have read, it would appear that around 78 percent of people wish to die at home. Of that 78 percent, I would estimate that a maximum of 17 percent of these people get their wishes. These estimates were confirmed when the Grattan report concluded. The Grattan develops high quality public policy for Australia's future. It covers everything, Budgets and Tax, Energy, Health, higher Education, productivity, Growth, School Education, Transport and Cities. Centuries ago, crossing all cultures, everyone died at home. Then, as medical practices became more widespread, people faced their deaths in hospitals. Then hospices came along, followed by palliative care, and now the trend seems to have come back to people wanting to make their final transition at home, with help from palliative care if possible.

For loved ones, it is very important that before making the choice to nurse a dying patient at home, they have some very relevant and important steps in place. It is a big decision, and remember that it may be changed. The one big factor to be aware of is that if the choice is been made by the family to keep a loved one at home, the dying person will likely have their heart set on this as the only option. However, if things do become too much for the family and they have to take the dying person to a hospital, nursing home, or hospice, the dying person may develop feelings of being let down, hurt and sometimes angered because they are to being shifted to an unfamiliar place. This can bring about a sense of guilt for the family about not being able to cope or meet the dying wishes of their loved one. Please be aware that there are always professionals, especially trained palliative-care staff, who can help smooth the way should a change of mind occur. Alternatively, you could get an ambulance to the closest hospital emergency department, where help would be given.

Truth

If you tell the truth, you don't have to remember anything.

— Mark Twain

There is such a fine line between answering questions honestly and disabling hope, but it is important to be as truthful as you can be with a dying person. To be frank, there is usually enough trepidation, insecurity, or upset in simply coming to terms with the bigger situation that hiding details from a patient (even with the best of intentions) could add additional strain.

Although you may be facing your own fears surrounding the situation, being considerate of the fears of the dying is the first priority. Depending on your relationship to the patient, there is definitely protocol about how much you would share of your own trepidation. For instance, I have never had a conversation with a dying person about my own issues, nor did I actively approach issues that might deteriorate the hope of a dying person. If asked a question, I would always answer as truthfully as possible but never entered any area that was not my jurisdiction. As a volunteer, there are clear boundaries. However, as a family member or close friend, I would suggest that you take your cue from the patient and your knowledge of the relationship you have.

I have often found that people have the insight through their vital energy that they are dying, but they do rely on family, doctors, and the people around them to tell them the truth, no matter how raw it is. If people around him or her do not support the dying person, the dying person could very well end up with the feeling that family or carers cannot cope with their situation, and the dying person will avoid talking to them or broaching that subject. This generally causes the dying person to feel isolated, nervous, and stressed. When you think about it. If a person is told the truth that he or she is dying, that person then has the opportunity to review his or her life, put in place any legal or financial systems, wind up their business or personal matters, or make provisions to help with the lives of the people he or she will leave behind.

I feel that a person who knows he or she is going to die has the opportunity to come to terms with his or her own life, and has the chance to reflect on the experiences and strengths he or she has gained through the life the he or she has lived. I remember Bob, a family member, being told he was going to die and in what space of time. It was beyond heartache at the time. Bob and Sarah, his wife, stepped out onto the street after being given the news by their doctor. They broke down crying, saying, "The rest of the world just continued on around them as if nothing mattered."

For many months after that, it was difficult for Bob. He kept reviewing his whole life, day-in and day-out. Bob and Sarah had hours of tears and hearty talks with their family, right up until his passing. When Bob's time to go had arrived, he had found his peace. He asked for permission to die, he was able to explain his wishes for his impending death (even down to which person he wanted to be with him at the time), and he died peacefully at home, with every wish he had asked for.

Because Bob had the support of the people around him and enough time to reflect on his life and make plans once he had received the news of his terminal condition, he was able make peace with his situation. This, in turn, eased the potential burdens his family and friends had to bear. As hard as the truth can be in the early stages, if handled with respect, it can bring comfort in the final stages.

Unfinished Business

In the land of the dying, sentences go unfinished. You know how they're going to finish.

— Daniel Wallace

Unfinished business causes great anxiety for all parties. Unfinished business for dying people may incorporate many different issues. One of the most common grievances is unresolved family argument. It can be painful for all parties especially if there have been deep, long-lasting, or particularly hurtful situations that have eroded into people's souls. If no one wants to address the altercations, to settle them and move on, regrets will definitely follow. Unfortunately, this suspends grief for both the living and the soul who is about to depart, and it can cause even more excruciating pain than an illness itself. Grief, in the form of anger, can be the single worst soul destroyer.

The following story I remember with such love; it is one of the most beautiful, heartfelt truths that I have heard, and it was told by a twelve-year-old monk in Bhutan. As is the belief in Eastern philosophy, souls pass from one incarnation to the next, and to do so peacefully they need to be able to transit with love and without baggage from their current life. Guilt, anger, and regret can hamper progress, whether it be their own or that of a loved one, as it is believed that this energy is transferred. Harbouring negative feelings and emotions carries with it the risk of illness or holding a deceased soul back from its natural progression.

Visiting a small temple outside a major monastery in Bumthang, I was walking with another lady (whom I shall call Lyn) around the temple when a young monk and his master approached us, asking us if we would like to go inside the temple and be given a lesson. Of course, we said yes. This lesson changed both our lives.