End of Life Public Forum 2 - Sr. Costanza Romano - Feb.6, 2014
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A presentation made by Sr. Costanza Romano during the free public forum "Continuing the Conversation: a discussion on preparing for end-of-life care" on February 6, 2014 at the United Steelworkers Hall in Sudbury, Ontario. Sister Costanza Romano is the Team Lead for Spiritual and Religious Care for St. Joseph’s Health Centre, Sudbury. Learn more about the forum at http://www.hsnsudbury.ca/events
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End of Life Public Forum 2 - Sr. Costanza Romano - Feb.6, 2014
- 1. THE EMOTIONAL/ SPIRITUAL/FAMILIAL ASPECTS Starting the Conversations End of Life Forum February 6, 2014 Sister Costanza Romano St. Joseph’s Health Centre of Sudbury
- 2. How to start the conversation • Good question • It is different for every person, situation, circumstances, etc. • What’s important is to start • Be open and honest • Be transparent • Share with spouses, children, siblings
- 3. “How lucky I am to have something that makes saying goodbye so hard.”
- 4. Realities • We are all dying • Avoid strife, arguments • Less of a burden • Fulfill wishes • Rituals/Funerals for the living • Help on the grief journey • “They should know” is not accurate • Values and beliefs will influence wishes • Death is not based on age
- 5. Speaking of death and dying is a very difficult subject but a subject nonetheless which needs to be broached Be prepared for a variety of emotions when this happens We do not have to wait until we know someone is dying to have these discussions How can someone know your wishes if you don’t tell them
- 6. Superstitions • If I write a will I will die • If I think about my or someone else’s dying, I or they will die • I’m tempting fate • If I don’t talk about it, it will go away • One size fits all
- 7. STARTING THE CONVERSATION • Start from a place of love • Start from a place of concern • Start from a place of peace • Make a list of the items to discuss • COMMUNICATION, COMM UNICATION, COMMUNICA TION
- 8. Emotions – Let’s look at our realities • Anticipatory Grief • Family Dynamics • Burden • Peace • Creating memories • Grief/Loss • Displaying and expressing love • Questioning faith
- 9. WHAT WILL I FEEL All the emotions are healthy Pain Joy Anxiety Love Anger Laughter Grief Concern Roller Coaster ride
- 10. GRIEF •Do not internalize grief – leads to more pain •Ministry of Presence •Share memories – speak about the person •We never get over grief it changes but does not end •Difference between grief and mourning Grief is the feelings Mourning is the display of that grief
- 11. 5 STAGES OF GRIEF Denial – no, not me! Anger – why me? Bargaining – yes m, but… Depression – yes me Acceptance – I’m ready, it’s ok Do not happen in exact order Can go back and forth between the emotions May never reach all the levels Most important thing to remember is that each of us grieves differently - no set time frame no set way to express our grief do not judge others There is no right way – only my own way
- 12. Things to Remember 1. Do not downplay the importance of the spiritual/philosophical aspects of a person’s belief systems 2. Constant communication - keep people informed 3. Update as often as necessary 4. Remember this is about the wishes of the person who is making these plans 5. Grief is a very individual journey
- 13. 6. Know your roles and limits 7. Promote family – resolve family conflict 8. Be realistic about resources 9. Remember self-care 10. Counselling and support groups are there to help 11. Listen, Listen, Listen
- 14. Death leaves a heartache no one can heal. Love leaves a memory no one can steal.
Editor's Notes
- The conversations I had with my parents was different with each of themMany have heard anxiety or nervousness represented or expressed as butterflies in my stomachThat’s okay – this is not an easy topicWho wants to discuss a topic such as dying and death when things are going wellAttitude is important – choose how you wish this conversation to be – morbid exercise or life giving (opportunity to share memories and learn more about your loved ones)
- Could this be the reason why the discussion is so difficult
- Dr. Chochinov – if you have a pulse, one day you will notSaying - Two things in life are certain – death and taxesWe live in a death defying culture – the reality is that we are all dying – how is the choice – I choose the attitude with which to live and die.State these clearly – remember you can change your mind at any time – this could avoid the disagreementsLess of a burden – focus is on being with your loved one who is dying without having to worry about the plans – honouring wishesThe services/rituals/funerals/remembrance services – these are for the living and a great aid in the grief process – way of expressing lossThis is a great opportunity to share love – saying “They should know” not always right – we all like to hear I Love YouEach of us has values and beliefs – this is part of our spirituality – will influence our choicesWe have all heard of young and old dying – death does not discriminate
- Father – Jehovah Witness – how would I know his wishes if he did not tell me – if we did not have the discussion?Faith is a part of our spirituality – need to honour our religious beliefs as wellMother – Life Support – taken off – how would I have known her wishes if she did not tell me – if we did not have the discussion?The discussion also had to be with my siblings – these were not decisions I made in isolationI was the POA and Executrix but these were not only my parents
- I have had a will/power of attorney since I was 18 years old – not because I thought I was going to die but so that if something did happen it would be easy for my family to know my wishes. I also speak very freely about my wishes – how can people know what I want if I don’t tell them?That is putting a lot of power in your hands that you really don’t haveThings happen – that’s lifeIf you don’t discuss or think about it, it will still happenThere is no one size fits all formula for the discussion or for the planningPart of cultures and traditions, belief systems – not easy to dissuade
- Perhaps you can start the conversation by talking about this forum - Out of a place of love – for each other – parents, children, siblingsDiscussion items – funeral arrangements – life support – obituary – family needs – many people do not wish to die alone – organ/tissue donation - fear of abandonment - often we hear people ask what is my legacy?It is absolutely imperative to communicate – know who you need to speak with and what you need to communicate – all familyImportant to remember that this is a process – not a end all/be all/final decisionEthical dilemmas may take place so this is another reason why the conversation should take place – do not argue at the foot of someone’s bed – this can be avoided if everyone is on the same pageWaiting until someone is dying is not practical – trauma (car accident), coma, etc.
- Anticipatory Grief takes place prior to an event happening - Anticipating the death of someone you love is difficult – orphan when last parent dies – loneliness when a partner diesThere are dynamics in families – that is why it is important to speak to everyone – create tension - love turned to hate, ethical dilemmas, sadnessBurden is lessened if things are clear – the more family knows about your care wishes, the better they will be able to act on them. Make sure message is consistent.Peace if things are settled and decided – may need to change things at some point – if things are decided, they can focus on griefJoy in creating memories of family unity – ability to share with those you love - look at photos – speak about familyIt is important to recognize that grief is a constant in our lives – even happy occasions can cause grief – ie having a babyThis is a good time to sort out feelings – do your parents feel they will be a burden if they wish a funeral?It is very common that questioning happens – even someone who has a strong faith can question – okay and normal
- It is absolutely ok to cryAnger can be healthy if it clears the air – the emotion is not bad – it’s what you do with itEmotions will come and go – ups and downs – joy and sadness, laughter and cryingThere will be things that you do not necessary agree with or go against your beliefs – this does not make them wrong – it is the person’s spirituality speaking and needs to be honoured – ie no pain meds – suffering is part of their faith tradition – cremation?If nothing else remember to honour a person’s wishes – if not illegal
- We sometimes tend to admire people who seem to be able to control their emotions - Internalizing does not allow us to honour our feelings by expressing them.When we share our grief outside of ourselves, healing beginsGrief is a natural reaction to any kind of loss and very normal. Often we have been taught that they are not normal - We need to look at our relationships as changed not endedOften someone who is grieving just wants to be listened to – you don’t have to have the answersUse age appropriate language – speak with honesty – trying to protect is not really a protection – fears developAvoid euphemisms – ie fallen asleepDon’t forget the children – do you want them to be afraid of death and dying – not so comfortable that there is complacency but comfortable enough to be with someone who is dying and have their own grief journeyI still cry on occasion when I hear a song about a father and daughterMourning is a catalyst to move us along on our grief journey
- The firsts will be difficultMemories are one of the best legacies that exist after someone loved dies – recently went through old photos with my family – parentsRemember that the relationship has changed – not ended – my parents will always be my parentsAnger is a natural emotion – do not however let it win – do not let anger cause family tensions – talk to someone – vent and then be ready to release it the person you hurt most when you are angry is yourself – no peace – constant turmoilThis is not a one size fits all solution – find what works and make it happenDo not let your emotions overwhelm you – if you are not coping well – get help – Bereavement Foundation; CounsellingDon’t let things fester – talk it out
- This is a part of the person’s life – important to them – they should never be dismissed but discussed We are all spiritual – not necessarily religious – spirituality is about who you are, how you deal with thingsCommunicate, communicate, communicate – keep people informed – if your wishes change but you do not let them know – how can they knowChange happens regularly – don’t forget to update your POA or Will to accommodate these changesI had to change my documents when my father died and when I entered religious lifeIt is important to honour the wishes of the person – that is why it is important to have it in writing and to have the discussionThere is no one way to grieve – do not judge
- Remember your place in this plan – you are there to carry out the person’s wishes, not your ownFamily can be your greatest support system - You cannot do everything – financially, emotionally, spiritually, mentally – again know your limitsAlone is not a good place to be – support is necessarySelf-care is all encompassing care – holistic care – body, mind and spiritRemember your support systems – do not hesitate to seek help – this is a sign of strength not weakness – you cannot always do it alone (misconception)Listen to what the wishes are without judgment or imposing your own beliefs, ideas, culture, etc. This can be a life giving discussion – memory building - stories getting to know each other at a deeper level
- Sharing in this journey is life givingDon’t miss out on the memoriesDon’t miss out on the opportunity to save yourself and your loved ones from the turmoil that can happenAfterwards let our love and memories carry usMy friend was 32 years old when she died – this was engraved on the stone at her grave