Hospice: A Holistic Philosophy

St Francis Hospice Raheny

Despite the fact that the hospice movement is well established in Ireland, for many people the hospice can remain a place on the outskirts. We spoke to Dr. Matthew Farrelly, co-ordinator of bereavement services in St. Francis Hospice, Raheny, Dublin about the Irish attitudes to death and bereavement, and the work and philosophy of a hospice.

 
'People's attitudes vary to the hospice. I think that there is a whole spectrum of views. There are some who would have an appreciation of hospice as a philosophy of care. A philosophy which aims to support patients, families, and friends from the very early stages of diagnosis of a life-limiting disease. But there are other people who would be very fearful of the word hospice. I think that many people in the street would just think of the hospice as a place for dying - the place of last resort'.
 
'But I think that there are shifts - and that this understanding is moving. One significant shift is within the hospice movement itself. There is a movement away from purely cancer and motor-neurone disease to incorporate other illnesses. And I think within the public there is a shift in understanding and appreciating the role that the modren hospice movement has around helping people to cope, not just physically, but psychologically. Death is a major transition for any family to deal with, and the hospice plays an important part in helping patients and family members with this'.
 

A Death Denying Culture?

 
Anyone who has read the Tibetan Book of Living and Dying will be familiar with the idea that the West is a death denying culture. But as with any dichotomy, when looked at closely, the situation isn’t as clean cut. ‘I think we are in a unique situation’ says Matthew, ‘in some ways I think yes, there are aspects of denial that are prevalent in our culture. In some people’s lives and families it is something that is absolutely not spoken about, it is something to be avoided. We still regularly work with people who believe that the person who is dying shouldn’t be told that they are dying. This idea that if someone knows that they are dying, they are going to turn their face to the wall and give in. It can be difficult to work with cases like that. But often it is motivated by the idea that ‘not knowing’ is always the best policy. It is an attempt at a kind of loving protection.  Other people might call it collusion, or withholding of information’.
 
‘But then again, there are a whole range of responses and attitudes. For the most part, when someone gets a diagnosis, they are open to the support of any group, of any services, or any people that may be available to help them. I think we are part of an increasingly secular, almost post-Christian society; and as part of that I think that approaches and responses to death and dying are shifting. I think that as a culture we are probably still more open and more supportive than some other contemporary Western societies. I think that there is a sense of openness around living with an illness that might not exist in other societies. We would often hear about strong community responses to a diagnosis of a life threatening or terminal illness: friends or even strangers in the community taking part in care rotas, providing meals and food for families while someone is being treated, it is not uncommon to hear these kinds of stories’.
 
‘Maybe we take this open approach because in Ireland there is still not a complete absence of a rural experience or connection. Even when we live in built-up areas, the rural experience is not very far away in our history - and with that comes a sense of connection, and a sense of vulnerability. We are also historically entwined with Christianity, and the legacy of that is an acknowledgement of mortality. And with a contemporary move towards other religions and spiritual practices and traditions, there seems to come an openness to other people’s lived experience. So this attitude towards death is coming from many different directions; I think that somewhere deep in our culture there is a respect for the transcendent experience, and a respect for the vulnerability of life’.
 

Individual response to death
 

‘Moving from a cultural response to death to an individual response, a high incidence of people, if they are well enough, will spent time actively engaging with the idea of death – they will explore their hopes and beliefs. I think that for many people this is a natural part of facing death. But they can’t do it full-time. They move in and out of dealing those issues. I don’t call that denial; I call it taking time off.  On the individual level I think that there is also often a unique openness to death’.
 
‘At the hospice, we try to accommodate this exploration. We have chaplaincy teams that are available to people, but there is no expectation that anyone would need to receive formal care from a chaplain. The hospice is open to people of all faiths and of none. And the support offered by the chaplaincy is part of the philosophy that underlies the hospice movement. I think it can often be surprising how many conversations are taking place between patients and various hospice members. With nurses, carers, volunteers; in homes, in cars on the way to day care, or in the in-patient unit. I think that many of these conversations are assisting people to access alternative stories of their lives that may often be richer than stories saturated with problems, or based around failure or guilt or brokenness – it is like excavating little diamonds, or pieces of gold – the patients are being given the possibility of different appreciations of aspects of their lives that they may never have spoken about. Maybe these were things that they dismissed or things that they hadn’t placed value on previously. It is about meaning making, and that is a very important part of the work that goes on the hospice, it is part of supporting people who are dying, and it is work that is shared by everyone involved at every level of the hospice, I don’t think it is rigidly confined to one discipline’.
 
‘I do believe that we are almost hard-wired to tell our stories if we are respectfully facilitated, and not forced to, but invited to. I think it is a rich part of our culture. We greet one another and say ‘what’s the story?’ That is a literal invitation. And I think in the hospice it is a genuine invitation that the nurses, the doctors, the volunteers, or the consultants are interested in giving. I think that part of the hospice philosophy is that we are all willing to listen to that story, and to listen to the explanation and the meaning of it’
 
Companioning vs Treating - Beyond the Medical Model of Bereavement Caregiving - Dr Alan Wolfelt, Ph.D

Companioning is about honoring the spirit; it is not about focusing on the intellect.

Companioning is about curiosity; it is not about expertise.

Companioning is about learning from others; it is not about teaching them.

Companioning is about walking alongside; it is not about leading.

Companioning is about being still; it is not about frantic movement forward.

Companioning is about discovering the gifts of sacred silence; it is not about filling every painful moment with words.

Companioning is about listening with the heart; it is not about analyzing with the head.

Companioning is about bearing witness to the struggles of others; it is not about directing those struggles.

Companioning is about being present to another person's pain; it is not about taking away the pain.

Companioning is about respecting disorder and confusion; it is not about imposing order and logic.

Companioning is about going to the wilderness of the soul with another human being; it is not about thinking you are responsible for finding the way out.

 

Bereavement

 
‘Are we, as a society, as open and supportive about bereavement as we are about dying? I think that is an interesting point to think about, and I would imagine that many of the people who come to the hospice to avail of bereavement support services might say to us that that they feel like they haven’t been given permission to be bereaved elsewhere. This is often due to other people’s expectations of the bereaved person, that in a set amount of time they should be ‘over it’, or not want to talk about it. It is pretty amazing that so many of us carry this expectation, even as bereaved people we carry this expectation. It is very common that you could have someone who has been married for thirty or forty years, and then their partner dies, and they come in and say that they feel like they should be getting over it. The truth of the matter is that many people feel under pressure to mask or hide some of their grief’.
 
‘We get drawn into this culture of positivism. You’ve got to be OK. It is very painful to witness somebody who is not happy, so we sometimes become closed down to other people’s suffering and pain. If I see you and you are grieving or having a hard time, or if you are not functioning as I am used to you functioning, then I am going to work pretty hard to get you doing OK again. This urge to ‘fix’ the suffering person is possibly based around other people’s desire to not have those about in pain'. 
'I would often get calls from a concerned family member who would say – “We need to help Joe, I don’t think he is coping very well”. I think this is very interesting language. What would ‘coping well’ with the loss of someone close look like? Often what they are trying to say is ‘Joe is bereaved’. We are living in this dominant discourse of the positive, and to be hurt or to be bereaved is not OK. I don’t think that we are living in a death denying culture, but I think that we might be living in a bereavement denying culture’.
 

Ritual and grief

 
‘It seems that there is an increasing awareness of the value of ritual. There is clear evidence that ritual is very important. As a society, we are moving away from the traditional religious institutions, and that is where many of our rituals have been located. But a movement towards other forms of bereavement ritual is evident; flowers are often laid at the place of road traffic accidents, and you’ll often see media people gathering around spots where a tragic death has occurred. I know that several consultants in the hospice have done studies and research around these kinds of memorials, and traditionally this wouldn’t have been an area of research, because everything would have been done through a church. Only last week I saw an advert in the newspaper for an annual service of remembrance for the Rotunda hospital, for people who had experienced still birth, near natal death, or the death of a child. I think that there is much more awareness on one level, of the value or ritual'.
 
‘The hospice is pretty impressive around its incorporation of ritual. We would have rituals of remembrance, like a candle lighting ceremony. And I think that for many people that wouldn’t be church goers, this is replacing a month’s mind. Sometimes it can be the first occasion that a whole family can gather after the death of someone’.
 
‘I would hope that increasingly, people are open to seeing hospice as a genuinely supportive and positive philosophy that can often help people cope with illness and death in a way that respects individuality, and very much embraces living life to the highest capabilities, throughout the whole of life; rather than having a sense of the hospice as just being involved with the end stage of life’.
 
 
About the author: 

Matthew Farrelly, PhD, MSW is Co-ordinator of Social Work & Bereavement Services in St Francis Hospice, Dublin. He has extensive experience of working with individuals and families dealing with loss as a result of terminal illness and bereavement. Matthew has taught nationally and internationally in the area of bereavement and its impact on the family.

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