The Answer: Compassionate Care

John C. Willke

Our concern here is not with the sudden death, the accident, the stroke, the heart attack. Rather, it is with those who die more slowly. The thrust of our discussion has been that suicide is not the answer. What, then, are answers?

First, one must realistically admit that dying, with some exceptions, is difficult. It is not usually pretty. It can be unpleasant, nothing to enjoy, and often times burdensome. But every person must someday tread that path into the Great Beyond. That person may someday be your parents, your spouse, your children or grandchildren, your dear friends, your loved ones, and, of course, one day yourself. Our task, if possible, is to make this passage as comfortable as it can be made, as meaningful, as fulfilling and peaceful as it can be made. Our task also is to leave those persons around the dying one with good memories, loving memories, and a sense of peace and acceptance.

Easy to do? Not really. But it can be done, and it behooves each of us to try. Most are familiar with the stages that a person goes through after they are confronted with that edict that the end of their worldly existence is coming. Hopefully, there are supportive persons around - ideally spouse, children, family - but otherwise friends and, at the very least, professionals in a hospice or equivalent setting. They must give support to this person, as he or she slowly deals with and accepts the reality of what is to come.

Fear, depression, anger, despair, loneliness are all part of this. Certainly physical symptoms and pain will aggravate it, and we have discussed this in depth earlier. The medical team must see to the fact that the patient remains reasonably comfortable physically. But that may well be the easy part. The difficult, but potentially most fulfilling part, then, lies ahead. Hopefully, with support and help from others, the dying person can get past her anger and come to the point of accepting that she will die, come to the point of losing her fear of the loss of personal control of her existence. The macho man and the independent woman must accept the fact that they are becoming dependent on others, something that often is an entirely new experience as, for many, they’ve never allowed themselves to be dependent in the past.

With this, then, often comes a feeling of uselessness - a knowledge that they will become “a burden” to others and a pervasive, continuing fear of this slowly developing, slowly chang-ing, slowly progressing different existence.

What, then, lies ahead? A clamming up, a shutting out of the world? Despair? Hopefully not, for there is so much to do before each one of us dies. None of us has led a perfect life. Through our lifetime we have made mistakes, and we have done many things that we have regretted. Ofttimes, these actions have been directed at or were directly related to those closest to us - a spouse, a parent, a child, a sibling, a close friend or someone who once was close. In each of our lives we have left behind people who have been hurt, as we too have been - misunderstandings, resentments, buried anger.

But we have also, during our lifetime, often in so many ways taken for granted those who cared for us, who have helped us, who have done us so many favors, who have worked with us, who have loved us. To these, how often have we said, “Thank you”?

And then, of course, there are the very practical arrangements. How does one arrange for the disposition of his or her earthly goods? This certainly includes finances, but it also includes so much more -- those pieces of china that her daughter so loves, Dad’s old cane, the piano, pieces of her jewelry (valuable or not), other family or professional mementos. What of all of these? She won’t be needing them anymore. Now is a time to

Without question, for many or most, there is a need for spiritual reconciliation, pondering, praying, and an attempt to make things right with the Lord.

Many people will say they hope that, when they go, they go quickly. But many of us, experien-ced in terminal care, would not share that. Rather, we see value to that time at the end. There is a five-point commentary for those familiar with hospice care. These are a marvelous way of stating what one’s end can be like. Hospice calls them “the five things of relationship completion”. They are “I forgive you -- forgive me -- thank you -- I love you -- goodbye.”

Hospice care, or its equivalent, properly accomplished, lovingly and professionally done, is without question modern society’s answer to euthanasia. Hospice is usually a building, an institution, but its services are not confined to four walls. More patient hospice care occurs at home, on visits to nursing homes and in other settings than actually occurs within the walls of a hospice. It is a wonderful place to go to die. An acute hospital is too often a lousy place to die. An acute hospital is too often noisy, the lights never go out, the patient next to you keeps you awake, you’re constantly being bothered to have your temperature taken, your blood pressure checked or meals to eat. There are problems with visiting hours, and the list goes on.

A hospice is an approximation of the ideal situation of dying at home. In a hospice, there are no heroic efforts to prolong a life. When life naturally ebbs and slips away, that is accepted, not fought against. In a hospice, there is an expertise available for pain control. That, above all, is taken care of.

In a hospice, visiting hours are whenever your loved ones want to come. They can stay as long as they like. Visitors can and should participate in the care of the patient - feeding, bathing, oiling, rubbing, singing, talking, praying, listening. This is a place where grandchildren can come and even bring their pets. This is a place where clergy are not merely squeezed into a busy schedule, not merely tolerated, but accepted as an integral part of the team. This is a place from which the patient can leave to go home, if his or her condition improves for a time. This is a place where you look out the window at a sylvan setting and not at a powerhouse or parking lot.

Hospice provides a team approach. Doctors, professional nurses, yes, but social workers, clergy, physiotherapists and, above all, the gift of time. Does that busy, efficient professional nurse in the hospital have time to sit down and just talk, or, more importantly, to just listen to the patient? Rarely. But in a hospice, that is her job. As it turns out, a particular patient has an estranged brother in a distant city but no nearby family to make that contact. In a hospital, very likely nothing is done. In a hospice, that is what they’re all about. They will contact him and urge him to come to visit, to talk, to share before his sister dies.

In a hospice, all of the various workings out at the end of life that are described and touched upon in this chapter are most emphatically the business of the hospice. The emphasis upon living with dignity until death and the very special and compassionate way of truly caring for a patient in the most complete fashion physically, emotionally and spiritually - that is the business of hospice. If you have a hospice available to you, you are fortunate. If you do not, perhaps some of you might become involved in setting up a hospice in your community. If not, then perhaps each of you, when that opportunity is presented to you, may attempt to do your part in being a one-person hospice to your loved one who is dying.

With knowledge of the above being hopefully available, let us then look further at how the time of dying can be a rich and fulfilling time.

Substantial personal growth can occur while approaching death and, literally yet, while dying. Dying, in that sense, can be a time of personal fulfillment to the patient but also to those around him.

This can be a time to complete such as the following:

A son, long estranged from his father for perhaps, in his mind, justifiably good reasons. The father is near death. That son can come back and, forgetting who was guilty of what, can tell his father that he loves him and ask for his father’s forgiveness insofar as he himself was in the wrong. A father’s response in such an instance is usually one of embracing him whom he sees as a prodigal son. Such an exchange of love, very likely with tears, can release both from the emotional bondage of long-harbored anger and resentment, but also can alleviate personal guilt.

A grandfather can gather grandchildren about him and recall for them tales of his earlier life, of his own boyhood and growing up, of how he met their grandmother, their courtship and marriage, their bearing and rearing of the parents of these children. Stories such as these, often heard for the first time by these little ones, will not be forgotten. They offer a bridge to the past, a tie in blood between generations, a pride of “ownership” in having had this grandpa. This also serves as a positive and loving example to these children’s parents, and to the children themselves, of the inter-generational role that grandparents can and should play, and that hopefully each of them will play someday.

A divorced wife, long estranged from her husband, carrying with her, as does he, a wall of bitterness from that painful separation experience. Deep inside both of them, completely unspoken and fully repressed (most of the time), there usually yet remains some feelings of regret, of perhaps not having put forth the full effort each could have to preserve that union, of perhaps even being somewhat ashamed of oneself for having done or said some of the things that led up to that break. All of these can add up, deep inside of each, to unresolved emotional feelings. If she can come to this dying man, lay beside him on the bed, embrace him, tell him how she remembers their initial love and that some of that still remains in her heart, tell him she’s sorry for whatever hurts she has caused him and ask him to forgive her. Almost certainly the wall between them will dissolve. He will accept, forgive and respond to her in kind. Now all of the facade, the built-up incrustations of time, the pride, the self-justifications fade away. In such a tender moment, the result can often be that he can die in peace, that she knows it, and that she herself can go back to her own life with a lighter heart, a cleaner conscience, a burden lifted from her soul, and a peace of soul.

This can be a time of clearing one’s spiritual conscience of guilt and sin, to share time with a priest who can offer forgiveness in the Sacrament of Confession, to share time with a minister or with a rabbi to discuss and relieve one’s soul and to be reassured of God’s forgiveness of past sins. To share such a time with a trusted friend. This is a time to open a locked conscience and get such previous violations of God’s rules (as he or she sees them) cleared from one’s conscience.

An example seen in recent years might be that of a son who had left his family to lead the life of a homosexual, to acquire AIDS and to come home to die. Hopefully, he will be received by his family with forgiveness, such as this may be warranted, with love and with care. If his conscience and value system so leads him, this could be an opportunity to ask for understanding - yes, and for forgiveness - from those whom he had left. Again a possibility, then, of bringing, both to him and his family, a degree of reconciliation, of sharing of love and of peace of soul.

For any and all such reunions it can be a time for a one-on-one - talking, listening, explaining, understanding and sharing. It can be a time of frank exchange of feelings, of why and how this happened, and then of a mutual understanding that none of this really matters anymore. It’s a time of following up those five acts of the Hospice Code which can be repeated in varying degrees with each of those loved ones with whom such a meeting occurs.

Memories are powerful things. They follow us our entire life. We have our share of bitter ones, of angry ones, of just plain bad memories. It is not good to bury those bad memories. It is much better for them to surface in an atmosphere where love can be exchanged and mutual forgiveness is relatively easy to extend. When we strip away all of the encumbrances of modern life - of money, of prestige, of power, of pride - the important things that remain at the very end are our relationship to people, primarily to our own flesh and blood, to those we have loved, those who are closest to us. It is so much better to bury good memories than bad ones.

Conclusion

Your author and many others who have cared for dying persons hope that each of you, when confronted with a person who is dying, will try to make those last weeks and days a time to remember, a time of fulfillment, a time to consider once again those five last acts:

I forgive you

Forgive me

Thank you

I love you

Goodbye

J.C. Willke, MD

President - International

Right to Life Federation

The Continuing Threat of Euthanasia

International Conference 1997

Schreeuw om Leven – Ruitersweg 35-37, 1211 KT Hilversum, The Netherlands

phone +31 35 624-4352, fax +31 35 624-9141, e-mail schreeuw@solcon.nl, internet www.schreeuwomleven.nl