Whether you are dying or caring for someone who is. emotions, and other difficulties people with cancer may face during their last few months or weeks of life. Go to latest post 11 replies, last reply 17/01/ - There's several here in our situation and I have some lovely forum buddies who my life and that's fine, but dying with cancer was not something I ever strived for. Final days. What happens in the last days of life is different for everyone. But it can help carers and relatives to know a little about how things might be.
with in Recent cancer Dying discussions
We can help you find practical and emotional support at the end of life and through bereavement. There are many practical and emotional issues to work through when you know you are reaching the end of your life. You may experience a range of emotional and physical symptoms after your relative or friend has died. Hearing that you may be reaching the end of your life can be very difficult, but there are people who can support you.
When people are nearing the end of their life, many find they have things they want to sort out. Our booklets and audio CDs talk about what might happen when someone is coming to the end of their life. If you're living with cancer, you will have a lot on your mind. Our information and advice about possible practical issues could help you to talk about them. We want everyone to have a Macmillan nurse by their side every step of the way. Help us be there for more people than ever.
What's happening near you? Find out about support groups, where to get information and how to get involved with Macmillan where you are. In our latest cancer information blog, our editor Imogen looks at ways of coping at the end of the life and where to find support and information.
This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here. Thanks We rely on a number of sources to gather evidence for our information. We thank all those people who have provided expert review for the information on this page. There is nothing to romanticize. There is no mellow philosophical self reflection during that time.
Instead there is fear, extended grief, hardship, suffering, enormous financial burdens. No death could have been more cruel. Not in the slightest.
It was sad of course, and was a long time coming. It has increased my joy of life as I am now part of the exclusive club of people who truly know that life will end and the only possible insurance is to enjoy the moment.
Their study also quoted UK evidence indicating that dying of cancer was associated with better access to palliative care services — a finding that has been reported in other countries. Arguing the pros and cons of different ways of dying may seem a futile exercise, given that the choice of how we die is rarely ours to make. Even those opting for suicide, whether assisted or otherwise a fifth way Smith chose not to include , cannot choose the circumstances that led them down that path.
This could well pay off when the time comes, Smith told Cancer World. His father died a quick and easy death from renal cancer: He had a magnificent death. His mother, meanwhile, lives in a nursing home and has had no short-term memory for 10 years. And he did issue an apology to the people who had been angered and upset by his post.
But he also points out that most health professionals who commented broadly agreed with his core argument: Whereas if you die of cancer, you can sort out things, you can say goodbye to people. Carlos Centeno is palliative care specialist based at Navarra University Hospital, in Pamplona, who is leading efforts to map and develop palliative care services across Europe, and has 20 years of experience providing symptom relief for countless patients, particularly during their final months and weeks of life.
He points out that many years before her own death, the founder of the hospice movement Dame Cicely Saunders said that if she could choose what to die of, she would choose cancer.
Centeno is clear, however, that the rose-tinted death we all aspire to is the exception rather than the rule. We know what to do, in other words. I am so sorry to read about this. It is so very moving…. While Chris, I do meet occasionally; our paths crossed when you taught at the University of Manitoba.
I am so saddened that you and your wife were treated like an expired commodity. Please know my thoughts are with you and your family. Paul, our family encountered late realization as well. Thoughts and prayers going out to your family Paul. I imagine your presence was a great comfort. Thanks for this, Paul. And please accept my sincere condolences. My experience was slightly different and, as I read the responses to your piece, I realize why that was.
When my wife, Sheila Bird, was dying of what was likely the breast cancer she had twenty-five years earlier returning in a different form, she made the decision to stop all treatment when it became apparent that it would neither prolong or enhance the time she had left.
The very moment she made that intention known to the medical staff it was as if a switch had been thrown. Suddenly the arms-length, professional demeanour of the attending physicians and nurses a necessity of the job, of course became one of intense caring, incredible support in a very human way, and — dare I say it — love.
It was as if the inevitable had been accepted by Sheila — which it had — and now they could all be honest with her about the future and its variables. We were transferred to PC medical staff and the treatment we received from that moment up to her death in my arms at the Maycourt Hospice in Ottawa four months later was absolutely excellent.
But I realized that our experience hinged on the fact that Sheila made the decision herself and that precipitated the shift in treatment. I would hope that the system could work that way for everyone.
Thanks again, Paul, for shining a light on it. I saw her here in town occasionally when I worked on the Hill. I think we were living abroad when she died. I am pleased to hear that she was able to feel a degree of control in her final weeks and months. Suzanne had come to a point of acceptance too, though very late in the course of her disease. Had she been afforded the opportunity to meet earlier with a palliative care physician I truly believe she would have been ready in a fuller sense, not just emotionally ready for the end but prepared to meet the specific rigours of those final days.
I have done palliative care as a PSW and also as a volunteer to Hospice. I feel passionate about end of life care. The people I looked after appreciated an honest approach form those around them.
Helping people to fulfill unfinished business and to give them compassion without pity is so important. When asked questions the answers where not always easy but they were necessary. Sometime an ill person cannot rage or discuss things with someone they love. They feel as if they are burdening a loved one.
Thank you for your work. What generosity to choose to help people in such a sad and trying moment in their lives. This is quite sad, and though, too common for sure. Still, this couple received ANY care far too late, and that is tragic for them both. She would have been comforted by a better understanding and I would have been in a better position to understand her wishes.
So very sorry for your lost. I hope your story will prevent this happening to other vulnerable persons with cancer. We have to educate people, give them more knowledge as to what to expect, when they go to palliative care. As a palliative care provider practicing in the U. I am struck by an interesting distinction that stems from our different health systems. I am one who wishes our system was like the Canadian single payer system. But perhaps in this situation, natural health interfered with an early referral for Palliative Care.
Palliative care, on the other hand Can be introduced at any time in the disease trajectory and is reimbursed as if it were any other specialist. This enables us to aggressively manage symptoms and begin discussions around wishes and goals of care during the active treatment phase. I wish I could say that because the reimbursement model exists that our patients get earlier referrals all the time.
Alas, this is not the case often enough. Often the primary specialist Oncologist, pulmonologist, etc. And we too have a lack of sufficient numbers of Palliative providers to meet the growing demand. Thanks for being part of a growing number of voices speaking out for the need to enhance palliative care knowledge. Thanks for your comment. My sense is that in theory palliative care is allowed from the point that advanced disease is diagnosed. However, it may be that the resources are not yet in place, though they seems to have been growing in recent years, to meet potential demand.
In effect, these precious services are being rationed, or triaged, in some places by making this sharp distinction. Thank you very much for sharing this private and painful information with us, the public, many of whom will be in similar circumstances in years to come.
Forewarned we need to press for reforms. Many thanks and best wishes to your grieving family. I was not aware, Paul, of the end process your wife endured. And that you endured. I only knew she had passed. My sincerest sympathies to you and your kids. Amazing that Our modern western society pretends to ignore the dying process and refuses to prepare us for the inevitable at great cost and human suffering.
I think the system is trying to adapt, but too slowly, and the result is that palliative care is being rationed in effect. I am so very sorry for your loss. Sorry as well,that the system failed you and your wife. As a nurse myself, I have a hard time letting go when a terminal diagnosis is made. However, giving them the access they need to assist in making informed choices and options is one thing I try to ensure happens.
The fact that you were not given the right to speak with a palliative care physician is unforgiveable. Your article is an eyeopener for many. Education for our patients and families is so often overlooked and I am sorry for that. You were not totally prepared for the process of death your wife may go through in her journey and I am certain you were taken by surprise and unprepared for most what you witnessed. No excuse is a good one.
I know not everyone in this situation is emotionally ready to deal with each turn in the course of their disease. However, my wife was a very rationalistic person. She wanted to know exactly where she stood and wanted to know where she was likely to be standing next. She had a thirst for information. Throughout the course of her treatment, we were usually able to get the information she wanted and needed, even if it took some persistence to do so. But in this case, persistence which was considerable but that I did not describe in any detail in the article did not pay off.
We tried hard to get access but were denied. Adams, and an all too frequent reality, Thank you very much for documenting this difficult tale.
Hi Paul, I am so sorry for your loss as well as for the suffering of your beloved wife in her last days. Retired now, I used to be an ICU social worker. I saw my role as being able to offer patients information so that they could make informed decisions about their care.
A palliative consult when one is diagnosed with a life threatening illness should be something willingly offered versus a fight.
Such a consult helps ensure quality of life as the patient continues treatments as well as helps them know what to expect, both throughout treatment and when enough is enough. Palliative care is the most humane and compassionate thing we can offer people facing devastating illnesses. If a physician resists this request stating they are able to do alone what a palliative team would do, it is time to change doctors.
Thank you for your letter and for helping people see the importance of a good death both for the patient and for the loved ones they leave behind. In our case Suzanne was referred for palliative care six months before her death. I did not describe this in the article, but it was only through considerable persistence by me over many weeks that I was even able to find out that the referral had been denied.
In our case, at least, it was not a failure of our oncologist to make the referral, but the refusal of the system to honour it. Too many patients and families think palliative care means giving up.
They are afraid it means no cares given. She received a timely referral and despite considerable efforts by me, we were unable to secure the appointment we sought. I am so sorry for your loss. My sister 54 just a month b4 her death never met with a palliative care physician, but just 5 days before she died was placed on hospice care. She too lost her oncologist who had treated her breast cancer mets for 6 years. This is a sad story very similar to what I have heard from others.
The handoff from the active-treatment specialist is often awkward and even hurtful. This is an aspect I did not address but deserves deep attanetion. This issue of the hand-off from the active-care specialist demands deep attention. I have met or heard from so many people who were shocked, hurt and felt abandoned. Surely it does not have to be like this.
Ideally meeting palliative care much earlier would have, no doubt, been beneficial for all of you. Our palliative care team sees people often from the point of diagnosis. We call ourselves supportive and palliative care. The preparation time is important, as is living with a life threatening illness.
Making the moments count, getting on with living even facing death. I think we are getting better at providing timely palliative care. As with everything we need more resources to accomplish this for all families.
I have heard from many people who received palliative care consultations in a timely way, and in almost every case, they found it eased their path. This is so sad to read Paul, as a Palliative Care Specialist nurse in SW Sydney, Australia, of some 17 years, we have a great relationship in the most part with the Oncology and Radiation Oncolgy staff and work togethher to ensure the best quality and plan for EOL care, often the patient gets their wish to die at home well supported.
This is the aim and not only for cancer patients. We clearly discuss what to expect and how best to manage care whilst still affirming life. I have next to no regrets regarding the treatments we chose for the 2 years he was able to fight his cancer.
However, all I able to think about since his death in April of is the last two weeks of his life and how absolutely horrible they were. And what did I learn? So I find myself really struggling with the last days of his life more than anything else in this whole process… I thought watching him suffer from treatment was hard. That was nothing in comparison to the last 2 weeks of his life. I hope you find some peace from these thoughts.
You obviously loved him deeply, which I am sure he knew. I think the problem is that people fight so hard to live. And medical staff fight so hard to heal. Sadly, sometimes quality really is better than quantity. They feel like it means they are giving up. I know from the people I have met and heard from that many people resist the implications of a palliative care consultation.
Her oncologist recognized she and I were ready when she referred Suzanne. The system failed her. I am a hospice nurse in the US. We have different practices as to both palliative care and hospice. Where one commenter above indicates a DNR was required, that is not the case here for either palliative care OR hospice. You can be a full code on both, per Medicare. Some hospices individually dictate that you must be a DNR to sign on with their agency, but this is categorically a misrepresentation of the hospice benefit as well as a violation of the patients rights.
However, as a clinician I do help a family decide at what point in decline it would be best to not subject a frail patient to an incredibly strenuous procedure guaranteed to break ribs with poor results.
To be hospice eligible, a cancer patient will have shown signs of disease progression not responding to treatment, and if the patient decides to discontinue pursuing curative treatment they can still purse palliative treatment with chemo and radiation that is covered by the hospice benefit. This is implemented while monitoring tumor size. If by the grace of God the palliative treatment actually succeeds in reducing the cancer beyond the designated parameter that differentiates between palliative and curative, the patient is freed from Hospice to pursue further curative treatment if they choose.
Patients with other non-cancer diagnoses heart failure, COPD, Alzheimers, etc must be evaluated and determined by a physician to have a prognosis of 6 months or less. A huge difficulty we still face just like in Canada is educating not only the public but physicians on Hospice and Palliative care, despite Medicare providing the benefit for 30 years now. Few people understand the difference between them and even more difficult, when to initiate either.
But palliative care does NOT require hospice enrollment in the US because the patient can continue to pursue curative treatment. He presents an excellent analysis of this very problem. We have a similar problem in the US as you do in Canada. There are so few palliative care specialists available.
We have one palliative care group in my town through our university health system, and they are overwhelmed. I work for a separate health system that employs over 10, people in a 16 County area and has only one nurse practitioner who specializes in palliative care.
In any hospice organization the physicians who serve as medical directors MUST be specialty certified but often have other full time practices. In my own company I am the only registered nurse with additional specialty certification in palliative care. My organization is trying to encourage the other nurses to obtain this certification but it is very time consuming. We are working under crushing workloads already, and often too exhausted to contemplate this path of study.
I see the challenges from within the organizational standpoint and it seems Sysyphean…. It so often breaks my heart when my families finally reach hospice having made it through with a minimum of the support that could have changed quite literally everything. I think philosophically our system here in Ontario accepts that palliative care can run in paralllel with other forms of treatment. Operationally, however, it is very different, both because of failures of understanding by practitioners as well as patients, and because of a lack of resources.
It is truly sad that your wife did not receive palliative care in a timely manner. There is much confusion around the role palliative care can play even while receiving cancer treatment.
Education and conversation is sorely needed for both health professionals and the public to break down barriers and demystify palliative care. This Canadian Cancer Society funded project is an immersive play based on real narratives from both cancer patients and caregivers about palliative care.
Feel free to share the word about this project. Thanks for sharing this valuable information. It left me wondering how much control do I want to have over my destiny during the final days.. I think,for me, I want to have my family around, for sometime, saying goodbye, having a few good laughs, then drug me into a permanent sleep.
It irks me to no end to see people suffering at all when they are dying. This final event in ones life should be effortless, pain free, and calm. Maybe it is all about being prepared, and your article truly was an eye-opener. Thanks again for this. It will be food for thought all day now! I really believe that for many people at least, a fuller knowledge of what to expect and what decisions may have to be made, would relieve a little of the anguish, physical as well as emotional, of what is inevitably a grievous experience.
Dear Paul, Thank you for sharing your heartfelt experience. I am sorry for your loss. Your writing has ignited the fire in my soul to pursue my passion. To make a difference for both patients and their loved ones.
Thank you and God Bless you and your family. This needs to change. I know, because I work with Hospice. God bless to all involved!! In our case, both our oncologist and we ourselves recognized it was time for a deep discussion around palliative care.
The system, unfortunately, failed us. In the States, there is a difference between palliative care and hospice. Hospice is for the last months of life, when curative efforts have stopped. Palliative care, on the other hand, can begin even while curative efforts are pursued. In theory, it is the same here. More and more people are recognizing that they can have bothpalliative Care and aggressive treatment at the same time. Yet in many places in the US are still the philosophy that if you are under aggressive treatment Palliative Care Has no place.
I think everyone here understands what should happen in theory. All too common a situation. My husband, declared terminal by the diagnostician ,had palliative care assigned immediately after meeting with the oncological surgeon and the radiation specialist but he had to push for MAID.
It should be on offer. He also pushed for a counsellor for each of us to guide us through the last months. They are available but doctors seldom tell patients or caregivers at this most stressful time of a terminal illness.
They are an essential part of this process and go far in lowering stress. My husband died when and where he wanted to and our MAID team was wonderful- frank, friendly and very kind, reassuring. BUT had he been fearful and utterly accepting at the beginning, he too would have had to decay on a palliative ward, losing any semblance of self respect and control— two vital characteristics of this man who , at I feel very sorry for what the poor diplomat had to endure at yhe end of what had undoubtedly been a most interesting life.
And even more sorry for her spouse in whose memory it is so thoroughly and horribly engrained. Thanks very much for your comment. I am sorry for your loss, but heartened that your husband managed to get the care he needed. You hit the nail on the head. When I last worked in palliative care we did not wothold food and especially fluids.
Withholding the basic necessities only serves to hasten desth and leave the dying in an uncomfortable state of living. Our doctors and nurses need to spend some time in palliative care doing their formal education. It may well have been the medically indicated thing. But the communication was appalling. We had a right to know what to expect, and to be advised in a timely, compassionate way, about these decisions.
My wife and I lived in Gatineau Quebec. When she found out her Multiple Myeloma cancer was coming in like a vengeance we Kim myself and her Oncologist Dr. Arleigh McCurdy decided it was time she stopped chemotherapy! We were sent home on Feb 16th from that appointment at the General Hospital.
Kim had chosen Mathieu Froment pallative care because she did not want to die at home! After not hearing anything for 6 days from CLSC. I called to see what was happening! I had to get the doctor to send the paperwork again to the CLSC. Finally they got it that day! Kim was getting really bad by this day!
Not really understanding what was happening to her! She would get up for the washroom and her legs were locking on her! I had to get the CLSC Nurse to assess her for pallative but when she came she was answering most of her questions! She told us your not bad enough for pallative care! But she hadnt seen how she was earlier and within 1 hour she was out of it again! Finally the Nurse from Maison Froment called me and said they were booking an ambulance for the next morning at This was February 23rd.
We arrived there and they were great! Took care of her very well! Our yorkshire Chloe and I were able to live with Kim! The next day she incoherent most of the time! She passed away Feb 26 She was my wife and soulmate and she will be always missed and remember as a beautiful woman! It should not be so hard for desperate people to get the care they need.
Your observations about our modern society are direct and sadly correct. I am sorry for your loss and am sure you feel honored to have been there when needed most. I have experienced sime of these things with my own family members. There is it seems like an opportunity for improvement in a good system. There is room for a more considerate heart when it comes to healthcare design, not just in its administration.
He arrived at Emergency a couple of months ago to be told there was nothing they could do. The Palliative Care team took over and gave him treatment which repaired his bowel and he is now home on medication and enjoying his final days in this world.
We need to start referring terminally ill people sooner to Palliative so that they have quality of life until the end. As a retired hospice nurse, I was often sad that family members or patients would not stop fighting for life which led to major suffering.
Perhaps Palliative Care is easier for more to hear— even physicians who see hospice as giving up. There exists a need for more education on this topic. In addition, all families should be able to disuss how they want to live until they die. Just knowing this enabled open discussion about end of life options.
‘I’m 16. Five months ago, I was diagnosed with terminal cancer’
Are you a cancer patient? Here you can How do we talk about death and dying ? This is a From last 2 yrs his cancer cell comes back the 4th time. Doctors. But is dying from cancer so much worse than the alternatives? The scenario he painted – “reflecting on life, leaving last messages, visiting. The final section of this work includes a brief discussion of the most More recently, the experiences of 18, dying patients under the direct.