Our stories
Gillian Gorick
I am Gillian Gorick, originally from England; I came to New Zealand in 1957.
In 1945 I trained as an Orthopaedic nurse, and in 1947 as a Physiotherapist.
I worked as a Physiotherapist until I retired, since when I have done voluntary work in various capacities.
Over my working life, I saw many dying patients. Some died well, some were kept alive for a few days or weeks, and once, for months.
Thirty years ago, at the age of 82, my mother became very ill with congestive heart failure and multiple infarctions. She was admitted to hospital over a long weekend. Her initial treatment helped her breathing but her pain was NOT treated well. She was seen by a very young doctor.
She was offered codeine tablets for pain; she was unable to swallow them. NO stronger pain relief was offered in case she became a drug addict!
She was 82, obviously dying and in very great pain.
She kept saying “such pain – such pain”. Thankfully she eventually became unconscious and died. Today her pain would have been better controlled.
I have NO wish to die as my mother did, or as the patients I saw ‘being kept alive’.
I do NOT want to be spoon-fed which is a form of slow starvation.
I do NOT want to be in nappies.
I do NOT want to no longer know who I am, or who my friends are.
I am NOT afraid of dying, we are all born and we will all die.
I hope to die with my dignity intact, being kept comfortable with whatever is the best treatment for me.
I do NOT want to be kept alive for a few more days or weeks.
I am now 86; I think I have been a useful, caring person.
I have enjoyed my life.
I HOPE End Of Life Choice Bill comes in before I die. I am sure it will come eventually.
Jan Gilby
My interest in End of Life Choice began in the late 60s. I was brought up in a liberal home where many controversial matters were discussed, including abortion, donating body parts, homosexuality and Voluntary Euthanasia. My father had had a heart attack at 40 in 1960 and this impacted on his “quality of life”- quality being the focus.
My mother was diagnosed with breast cancer in 1973 and died in 1985. I stopped work to care for her 6 months prior to her death. Her slow lingering death was awful to watch. She was an articulate, intelligent, active woman and was always seeking new knowledge. As the disease affected her brain she became unable to see properly – she could no longer read.She researched a drug she had been given to make her “more comfortable” only to discover if had the potential to reduce the size of the tumours in her brain and consequently prolong her death. She was annoyed that the medical team , who were well aware of her opinion regarding prolongation of life when in the final stages of a disease , had duped her. She consequently discontinued the treatment.Watching her fade to a non communicating, immobile skeletal shell was very painful.
She had stashed some pills that had been prescribed to my father and when I found these I asked why she hadn’t taken them. Her reply being that she wasn’t sure she had enough “to do the job”.She and I had the opportunity to discuss life and regrets – one being the lack of grandchildren and another was not being allowed to choose when she would die. On reflection if she had been given the opportunity to make the decision I think it would have been 3 months prior to the disease “killing”her.
I have experienced the death of 3 other close family members – a 7 week old daughter from SIDS, a 23 year old son as the result of a motor bike accident in Croatia – his death was instant (broken neck) and my father.
I strongly believe that with appropriate control and legislation the majority on New Zealanders would be supportive of End Of Life Choice. Much as I miss and wish my children were here I am thankful that neither or them “exist” with conditions as a result of attempted resuscitation. Sam had the potential to be severely brain damaged and Ben had the potential to be on the planet in a wheelchair. He was a very sporty busy person and life would have been very frustrating for him. His surviving siblings and I are grateful that he has not had to face this. The rider of the motorbike is now a paraplegic who when he wrote to me said he believes Ben is in a better place than he is.
My father was admitted to hospital a few months prior to his death (he had had a severe stroke in 1983 and died in 1991) in a distressed, acute state. When I arrived at the hospital I was told that he was about to be put on a ventilator to assist his breathing. I was able to access his advance directive in his note and the medics agreed to do nothing- he did recover from this episode under his own steam, but it was reassuring for me to know that the living will was acknowledged.My life is my life to choose what I will do with.... as should the end of my life be.I don’t want anyone else to be implicated in my death but humbly request the opportunity to make the final decision.
Faye Clark
My story* began seven years ago when I was diagnosed with an incurable form of bone marrow cancer called myeloma, where plasma cells undergo malignant change and become myeloma cells, which multiply without any proper order, forming tumours that accumulate, mostly in the bone marrow and on the surfaces of bones in the body.
Treatment over the past seven years has included two autologous stem cell transplants, numerous chemotherapy cycles, and many referrals to pain clinic followed by radiography to repair excruciating bone tumours. Chemotherapy has resulted in ongoing compromised immunity, meaning I am often susceptible to infection. I’ve been hospitalised for acute pancreatitis and shingles, and been given many blood transfusions and regular bone-strengthening infusions. Cruel muscle cramps, especially at night, and painful peripheral neuropathy which affects nerve-endings in my feet and hands, are just some of the side-effects of chemotherapy.
Living with myeloma can best be described as a roller-coaster ride. When remission ended for a third time in late 2014, two new chemotherapy treatments were trialled. Each failed to control the cancer. From March to July 2015, a third treatment succeeded, but ended in a disastrous bone marrow malfunction. As a result, further chemotherapy has had to be abandoned. Since then my life has centred on emergency admissions to hospital, and blood tests up to three times a week.
Physical pain (primarily in spine and pelvis) has been, and continues to be, energy-sapping. For seven years morphine and other prescription drugs have been used to mask the pain, but have an enervating effect, meaning I am always tired. Recently when my morphine dose was doubled in an attempt to more effectively subdue my pain, it didn’t work. Instead it numbed and dulled my brain, a horrible zombie-like and not-to-be-repeated episode.
Whilst numerous medical interventions have lengthened my life, they have now been exhausted, and I endure a life with very little quality, a kind of half-life. I exist. I no longer have the energy to participate in activities that have always brought joy and meaning to my life, and I’m becoming increasingly dependent on others for assistance with minor everyday tasks.
I do not feel depressed or despondent, and I gratefully acknowledge that I have received the best haematology treatment our health service can provide. But I have now reached the stage where, having exhausted all available forms of medical treatment, my body, my organs and my bones will start to break down. My bone marrow will no longer be capable of making new blood, and painful tumours will corrode my bones, causing them to fracture or break. My kidneys will ‘silt-up’ and cease to function.
I have lodged an Advance Directive with my GP, the DHB and Hospice, and have given copies to my daughter and son. My children are wonderful and caring, but seven years of watching their mother undergo gruelling and invasive medical treatment has given them an appreciation of my reasons for wanting to decide when and how I die. As you can appreciate, I am not the only person affected by my suffering.
Naturally, my dream is to die a gentle, peaceful death, surrounded by my family and dearest friends. The reality is that I don’t know what kind of death I will have. To end my life in a medically-induced coma would be a humiliating, degrading, drawn-out way to die, and would be absolutely gruelling for my daughter and son to watch.
In the absence of legalised voluntary euthanasia, I can, under current law, legally refuse food and hydration, and I can request maximum palliative sedation, but I cannot ask for and be given medical assistance to die. Why not?
Legalised voluntary euthanasia, PAD, would give me that choice.
1. Factors that contribute to the desire to end one’s life
Unbearable suffering would be, for me, the most compelling reason for wishing to end my life. This could be pain that cannot be controlled, or simply feeling that I have suffered enough.
It’s wrong to think I want to end my life. I enjoy life, and I don’t want to die, but the cancer is killing me, and I am dying. I would like to be able to choose a conscious and peaceful death. But, under our present law, for me this is not an option.
I do not want a prolonged, agonising death. Bone cancer, despite best efforts, falls into a category of pain that cannot always be controlled. In 2011-12, I experienced excruciating bone pain, that I can expect again when bone tumours recur in future.
Nor do I want terminal sedation. To spend my last days in a medically induced coma, being drugged into an unconscious state, is abhorrent to me, and I don’t want my daughter and son exposed to this kind of pointless, drawn-out and degrading spectacle, but realistically, this is what I can expect.
If PAD were available to me now, I may elect not to use it, but I would like to have the choice. Without legalised PAD, I do not have that choice. Knowing I could have physician assistance to die when my suffering became intolerable would give me immense peace of mind.
Continuing loss of my bodily functions and increasing dependence on others for personal care are for me a distressing, humiliating and pointless prospect.
My body, ravaged by disease and the long-term side effects of prescription drugs and medical treatments, has deteriorated to the level where it now determines what, when and where I can go and do. For example it is too difficult to stay away from home overnight. I must carefully and cautiously plan when to leave home during the day. Walking is painful and after minimal exercise I become breathless.
Loss of ability to engage in activities which give my life joy and meaning:
My physical condition has deteriorated to the extent that I’m unable to enjoy activities that have always been important to my sense of self and personal wellbeing. My life has become relentlessly constrained. My world is now very small.
Participation in activities outside my home are now limited to pleasures (!) like driving to the hospital, blood clinic or supermarket, attending a (very) occasional movie, and sometimes meeting friends for coffee or lunch. Susceptibility to infection means I have to be cautious about mixing in crowds.
These days I have to ‘pace’ myself, as it is too easy to overtax my body and my mind. Whenever I’ve done a little too much, the tiredness I experience is profound, I feel weary, exhausted, unlike anything I’ve ever felt.
Despite the constraints however, each day is a gift.
Loss of personal autonomy
Self-determination, the right to make a personal choice or decision are guiding principles that have stood me in good stead throughout my life.
I’ve always respected the right of others to make their choices and decisions. I’d like to believe others would do the same for me -- respecting my right to know what is best for me.
Being able to choose the manner and time of my death, if necessary, is consistent with my personal values.
I do not wish to live a life without quality and dignity. I do not want to be diapered.
2. The effectiveness of services and support available to those who desire to end their own lives
The time is fast approaching when the hospital cannot, due to the unavailability of legal PAD, provide me with relief from physical, psychological and existential pain and a compassionate and peaceful death.
Having said that, I gratefully acknowledge the NZ health system. Waikato DHB, and more specifically, the hospital’s haematology department have, for the last seven years, provided me with exemplary specialist treatment, care and support.
Hospice services for people like me who have advanced, progressive end-stage disease assist one to live independently as long as possible, and I am grateful for the expertise, care and support given me by medical staff, especially the nurses and volunteers.
My choice for the remainder of my life, under current legislation, is a slow or prolonged death by palliative or terminal sedation. The other legal option, (if I can summon up courage) is suicide, a sad and solitary method, leading to an uncertain, possibly violent death by my own hand.
The claim that all pain can be successfully controlled is I believe incorrect. I expect that pain at the end of my life will not be able to be controlled. I have already experienced this pain.
I understand that loss of bowel and bladder function cannot be palliated. Likewise there is no palliation of psychological and existential suffering.
As I prepare this submission, I feel tired, indescribably tired, of living in a body that cannot and does not function well. I would like to be able to choose an alternative. Current law does not allow me to do this.
3. The attitude of New Zealanders towards the ending of one’s life and the current legal situation
Recent polling of NZ adults show 65%-75% support for legalised assisted dying, in conjunction with appropriate safeguards to avoid abuse. This means that 7 out of every 10 people consistently support law change.
As can be seen, the majority of voters in this country have for some years provided Parliament, our ‘House of Representatives’, with a consistent message to reform the current law to allow PAD for those who choose it.
This was the clear finding of Justice Collins in the Lecretia Seales case, that only Parliament can change the law.
The present Advance Directive (aka Advance Care Plans and Living Wills) allows for medical treatment to be accepted or refused. An ‘End of Life Directive’ would allow a patient to choose PAD, once agreed conditions have been met, even when the patient is no longer mentally competent.
Palliative care, Hospice and PAD should be regarded as complementary.
4. International experience
In international jurisdictions such as Netherlands, Belgium and Oregon, where such laws are long-established, there is no evidence of any systemic abuse occurring.
New Zealand has often led the world in terms of social reform. This is our opportunity to continue that tradition.
Now 72, I’ve had a good life. I’ve experienced the fulfilment of motherhood and the joy of grandchildren. Two successful professional careers have brought me tremendous satisfaction and sense of achievement.
Additionally, over the last 25 years, I have enjoyed carrying out a range of Judicial and Ministerial Justice of the Peace duties, and until very recently I regularly officiated at Marriages and Civil Unions. Sustaining me is the knowledge that together we can/will bring about an even more inclusive, intelligent, caring and democratic New Zealand.
To this end, I have one remaining project, to do everything in my power to bring about a change to the law regarding our care at End-of-Life.
Any such law change will be too late for me, but with your help, future generations will benefit.
There is a vocal minority who strongly hold opposing views. They are fully entitled to have those views, and to live by them.
I do not seek to change their views, but they are not entitled to impose their beliefs on me.
The manner of my death should be my choice.
* Faye's story is based on her submission to the Health Select Committee: An investigation into attitudes towards Physician Assisted Dying in New Zealand
Should I Have Called the Vet for My Mom?
Tamara Bennett
Several years ago one of our closest, most loving and loyal best friends was nearing her final days. She’d had a long and happy life, though not without some stress early in her life. When she was 2½ years old she was given up for adoption because her family could no longer care for her. For months she would eagerly watch families come to the adoption facility in hopes she would be adopted and once again feel the love of a family. Then one day a mother and son came in looking to adopt for an orphan the same age their son. After several hours and signing paperwork, she was free to leave with her new family.
Our friend enjoyed many years with this family. She loved the fresh air and country life. Best of all she was surrounded by a loving family. She developed a relationship with the local medical practitioner Dr John, whom she saw for her annual check-up. She was always happy to see John and for years was given a clean bill of health.
As the years went on, her body slowly showed the signs of aging. Finally one week she was not as interested in eating or drinking and she slept much more. Her family took her in to see Dr John and he explained that her organs were worn out and that her time was nearing an end. A short time later she became incontinent, was weak all day, and experienced several traumatic seizures.
Early the next morning the family called Dr John and within 30 minutes he came with his nurse. Dr John explained what was physically happening to our friend’s body: her kidneys had stopped working and her other organs were shutting down. He said the seizures would likely continue for days and be very traumatic for her and everyone else. He suggested a peaceful, painless injection to end her life. We did not want her to suffer and we all agreed we did not want to watch someone we loved so much suffer. Everyone said their last goodbyes. With the glow of the morning sun shining in the room, Dr John gave our close friend a tiny injection; she closed her eyes and went to a deep sleep. We watched her heart slow down until it beat its last. We all cried, but in our hearts we were happy that she did not have to suffer any more.
A few years later, my mother--“Grandma” to many--was unexpectedly diagnosed with terminal lung cancer at age 74. She had only recently retired and had joined several social and craft clubs. She and my father had looked forward to enjoying their well-earned long retirement together.
At first the medical practitioners told us that chemotherapy and radiation might stop the growth and spread of the tumour and could possibly extend her life another year. But within a few weeks we were told that she might have only six more months. We were devastated but hoped for a family Christmas. Mom endured five weeks of painful procedures and treatments in the hospital.
Then one day my father and I were called in and told that the medical practitioners had done all they could do for her and that they believed she only had two to three months left. They suggested she be moved to a rest home where she could receive continuous care. However, Mom wanted to come home and my father and I agreed we would give her the around-the-clock care she needed there. Within a few days my parents’ house was set up as a home hospice.
As Mom left the hospital my father was told that she actually had only two to three weeks left. My brother flew in from Switzerland. We spent days crying, laughing, telling stories, and reminiscing about the past. The 24/7 care was hard work, even with the wonderful support from home help, hospice, and the district health nurses. Mom was now bedridden and completely reliant on caregivers to do everything for her. We started giving her an oral morphine-based solution for pain.
Eight days after leaving hospital, a family meeting was scheduled with Mom’s GP, the district health nurse, and a hospice nurse to discuss the practical details of Mom’s last days. She had already decided she did not want intervention to prolong her life, but welcomed pain relief. She looked her doctor in the eye and said, “If the pain and cough are going to get worse, I would gladly take a pill [to die] right now!” Her doctor explained to her that she could not legally administer such a pill. Mom looked away and stared as if she were a million miles away.
That night was a long one for everyone. Mom’s cough was relentless and took every ounce of energy she had. The “rattling” from her desperate attempts to breathe were unbearable for her and for all of us. Our 16-year-old son stopped by unexpectedly and was traumatised to see her in this state. This will forever haunt his memories.
By the following day Mom mostly wanted pain relief and something to wet her mouth. The rattling and gasping were constant and nearly unbearable to witness. We asked the district health nurse to come out and give Mom another option for pain relief and to help us cope with what was happening. None of us had witnessed this kind of cruel suffering before. After several hours she was fitted with a small device under her skin, which administered a slow release low dose of morphine. This was not enough pain relief for her and she constantly groaned and made it known that she was in extreme pain and distress. We tried to give her oral morphine to ease her suffering, but she could no longer swallow.
At around 7:30 pm I noticed foaming puss coming out of her mouth. The three of us spent the next several hours clearing and cleaning up the constant volcanic explosion coming out of her mouth. These horrific images are engraved in our minds forever. At 9 pm, Mom attempted her last long gasping breath, and then she was gone. Finally she was out of pain and the end of her tortuous suffering she was forced to endure and that her family was forced to witness.
If only my Mom could have called on someone like Dr John, the local vet, to come out and end her life when she wanted, at the time she chose when she was ready, and in sound mind and body. She could have chosen to go with the glow of the morning sun.
I miss my Mom and our beloved dog Max. It’s a shame that my Mom could not legally be given the same dignity in dying as we could offer Max, when we called Dr John that final time. If only the New Zealand government had the heart to treat humans, as they do family pets, in their last hours, and allow them the dignity of a peaceful and humane deliverance.
My Life, My Death, My Choice
A brief summary of the circumstances of Margaret Page's deathA keen sportswoman, Margaret suffered a brain haemorrhage in 1991 when kayaking the Otaki River. The stroke left her increasingly disabled and needing to be fed and showered. Her speech was also severely limited. Her husband looked after her for some 16 years in their own home until she had to go into care in the St John of God Care Home in Wellington about 4 years ago.
Earlier this year Margaret decided to end her life by stopping both eating and drinking. The Home staff accepted her right to make that decision. Although they tried to dissuade her, three psychiatrists deemed her competent to make that decision. Staff continued to provide a "very high level of care" until her death and worked closely with her GP who visited daily, the Ministry of Health, and staff from the Mary Potter Hospice. Margaret died on the 30th of March 2010, sixteen days after making the decision to refuse food and water.
Both the Coroner and the Police have indicated that they wish to investigate. Their findings have not yet been publicised.
Ensuing comments:
Margaret's husband wanted her shifted to a hospital and force-fed. He claimed that whilst he was looking after her she often voiced her desire to end her life, but that he was always able to dissuade her.
Medical Association Ethics Committee Chairwoman Tricia Briscoe said that "if the patient has all her marbles, then they have the right to choose what they wish to do in terms of treatment. Food and water did not count as treatment and were outside the realm of a doctor's medical conduct. A doctor was there to alleviate a patient's suffering, not to ward off death." (NZ Herald News (3/4/10)
Family Life International issued a press release saying: "[We] are appalled at the apparent lack of action being taken to save the life of Margaret Page… We know from reliable research that, in the majority of cases, once the psychological needs of a patient are attended to, the desire to take their own life vanishes… [I]n actual fact, food and water are not medicines, but basic necessities for life, and as such they should be provided to a patient…(Scoop Independent News, 24/3/10)
A NZ Herald editorial (26/3/10) wrote that The World Medical Association "has revised its once-qualified position on hunger strikes and doctors' response by stating that force-feeding is inhuman and degrading treatment. It has said, in effect, that, when applied to someone who wishes to die, the practice amounts to an additional cruelty." The Editorial also mentions Mr Christian Rossiter, an Australian quadriplegic who "last year won a landmark legal right to starve to death. Western Australia's chief judge ruled that [he] had the right to direct his own treatment and that his nursing home would not be criminally liable if it complied with his wishes." Christian died of a chest infection in the nursing home in September last year.
The Dominion Post (31/3/10) mentioned that "Legal experts had said the law was on Mrs Page's side as she had been lucid when she made the decision to stop eating and drinking. However,suicide experts cautioned that assessing suicidal patients was difficult."
Dignity New Zealand founder Lesley Martin said that "when someone made a 'clear and competent decision' to die, they needed to be supported in a more humane way than what Mrs Page had to endure." (NZHerald 1/4/10)
Some of the hundreds of comments which appeared on various media websites included the following:
"If I was her husband I would remove her from that hospital and take her elsewhere … to get the right treatment for her… This is what you call cruelty, how can she be in the right mind to think for herself."
"I'm glad euthanasia isn't legal - Margaret was very brave to do what she did and she didn't need a euthanasia law to do it."
"Brave-hearted fighter, indeed. Always courageous. Forever principled."
"Shame for the family that it had to come to this, she was lucid and aware but knew it was her time to go. Who should stand in her way?"
"Between a doctor and patient the contract begins: 'first do no harm' There is no harm being done here. The patient is choosing to die. Perhaps the real question should be why she is not allowed to die with a little dignity and in a lot more comfort?"
"…if ever I should be in a situation where I choose (MY choice) to end things then I hope things have progressed to the point where I am not forced into this terrible situation. My thoughts are with her family but most of all with her."(3 News; Stuff) )
St John of God Chief Executive Ralph La Salle said that "staff and residents were deeply saddened by Mrs Page's death. 'Our thoughts and prayers are with Mrs Page and her family and have been throughout the past weeks - a time which has been exceptionally difficult and emotional for Mrs Page, her family, other residents, staff and everyone who knew her'."