Dying with Dignity? Can't Everyone Die with Dignity?
Recent news has focused on the news that a terminally ill patient ended her own life rather than let an aggressive brain tumor end it for her. Many praise this as a death with dignity but as nurses, let's make sure everyone dies with dignity by providing end of life care. Hospice and palliative care offer death with dignity every day for patients.
There is huge support for the recent case in the news about Brittany Maynard who recently took her own life rather than letting cancer take it from her in its own time. While many people believe that what Brittany did was a good and decent thing, a question remains: If the only way to die with dignity is to take your own life, what does it mean if you don't?
As a hospice nurse, I believe all of my patients die with dignity. They die with dignity because they are human persons, with the dignity and worth all human persons deserve. I certainly can speak for the fact that they suffer, that they decline, that they need help and support of others, but that does not exclude the fact that they have dignity. Nor does it diminish their honor that they choose to let nature take its course rather than letting a pharmaceutical cocktail end it for them.
It is my hope that no one believes that there is nothing to live for if you have a terminal disease. I hope all my patients know that. Life isn't always about being a perfect person, without sickness or debility. Steven Hawkings is an excellent example of this, although severely debilitated, and having a terminal illness, he continues to contribute greatly to knowledge, to science, and to many people who care deeply for him as a person.
Being sick or being terminal doesn't have to mean you have no quality of life. Not knowing what Brittany Maynard was told about her condition, I can only hope that she was given the choice to continue life with hospice or palliative care. Such care can give patients quality of life they did not know they could achieve with a terminal or severe illness.
Further, although a person may feel they don't want to live with sickness or debility, what they really may be feeling is that there is no hope, which is never true for anyone. They also may not understand or be informed that the things they fear may not happen at all. Often, health professionals opt to be totally honest with patients and let them know "worst case scenario" and while honesty is generally the best policy, sometimes too much information does a disservice to a vulnerable person. All of us know what happens when we look up diseases or illness on the internet: we learn things we never wanted to know or we learn things that aren't even close to accurate. Someone who has just learned they are terminally ill is someone who needs information but they also need support and at the end of life, one of the best supports is knowing that there is help no matter how dismal things seem.
With hospice or palliative care, many patients realize that their symptoms can be controlled and managed and they can go on living and enjoying each day. It is beyond doubt that most people given a terminal diagnosis fear not only death, but being a burden on others. With supportive care from hospice many of these concerns are ameliorated but a patient doesn't know that if no one tells them.
So before we start to think that the only way to die with dignity is to end a life, let's make sure we offer our patients every option for end of life care we can. Hospice and palliative care can make so much difference and give hope to those who may feel that they have no choices left. Let's make sure that every patient dies with the dignity of end of life care, given by health workers who believe that no one death is less dignified than others.
This topic is very emotional for me at the moment. Three people in particular have caused me to have a particular opinion.
My mother had breast cancer with mets to most of the bones in her body and some in the lungs. The pain was excruciating. The pleural effusion from the mets to the lungs caused her to have frequent pneumonia. She was emphatically DNR. She was admitted last January for PNA and was emergently intubated in the ER. When she got to the ICU, she was unable to get the staff to understand that she wished to withdraw care, so she self-extubated. They intubated her again. Finally, she got a nurse who was able to understand what she wanted, they called my family in, and she was allowed to die. I hate that she had to go through intubation, when that was not what she wanted. The family member who took her to the ER didn't have enough knowledge to ask for a "Do Not Intubate" order. I was in another state and wasn't able to participate in her care, except by phone, when they called me after the fact. I still have guilt over it. If she had been given the choice, she never would have been intubated in the first place.
I also had two patients who asked me to kill them. One was suffering from chronic osteomyelitis who had already been through amputation and had had enough. This patient was slowly rotting to death. Another was a nonagenarian who was suffering excruciating pain and simply wished to spare self and family from any further suffering.
These two had been fully briefed on hospice and palliative care. They had psych consults. No treatment options were left unexplored. One chose to go to inpatient hospice, the other mercifully died in the hospital. However, neither was satisfied with the options open to them. Neither saw the need for further suffering on their behalf. Neither felt like they had any quality of life. Neither had a choice. I think it was the inability to choose that makes me upset for them.
I have told my husband several times that if I ever die, let me stay dead. And if I get certain diseases, unless I specifically ask, don't trach/PEG/intubate. I have had enough experience caring for some patients and families that I couldn't put myself or my family through some things.
Specializes in Float Pool-Med-Surg, Telemetry, IMCU.
I am a proponent of individuals being allowed to make whatever choice works for them, however, as I stated in another post the phrase "death with dignity" really irks me as well. I don't appreciate the insinuation that to die naturally and to require assistance with ADLs, etc is somehow "undignified".
I am a proponent of individuals being allowed to make whatever choice works for them, however, as I stated in another post the phrase "death with dignity" really irks me as well. I don't appreciate the insinuation that to die naturally and to require assistance with ADLs, etc is somehow "undignified".
I can see where that would cause some rancor. I have heard another term recently that you may like better, "right to die."
I, too, believe that the definition of a death with dignity is determined by the patient. The person that inspired this article wasn't afraid of unbearable pain or being alone. She was experiencing uncontrollable seizures, had lost most of her ability to do the things she loved because of the complications from her cancer and, for her, the quality of life required that she maintain that one last shred of control: dying when she was ready and she was still able to make the decision instead of waiting for her higher functions to be totally gone.
Hospice is a wonderful thing but each death, like each life is unique. Not all of us wish to remain alive at all costs or unaware of our surroundings when our time to die comes.
I can see where that would cause some rancor. I have heard another term recently that you may like better, "right to die."
I too, prefer this term. "Death with dignity" is semantics, of course, and the media has taken the phrase and run with it. I believe in patient autonomy. I feel death with dignity is whatever the patient believes it to be. A lovely friend of mine died at home a month ago, surrounded by his loved ones. He had transferred to at home hospice care, and his nurses were amazing. It was his choice. He was kept comfortable all the way through that last week, and it was important to him to be able to die at home with family. I firmly believe that the patient deserves to make this decision. Hoping that my state continues with legislation in this vein.
I think when most individuals refer to "dying with dignity," they're really referring to dying on their own terms. I don't think it is an attack on hospice or palliative care, nor do I think it demonstrates a lack of understanding as to their merits. One's personal definition and parameters of dignity in any context are really not negotiable. My biggest fear is that someone else... anyone else... will decide what quality and dignity means for me when the time comes.
I think when most individuals refer to "dying with dignity," they're really referring to dying on their own terms. I don't think it is an attack on hospice or palliative care, nor do I think it demonstrates a lack of understanding as to their merits. One's personal definition and parameters of dignity in any context are really not negotiable. My biggest fear is that someone else... anyone else... will decide what quality and dignity means for me when the time comes.
I don't think it is an attack on hospice or palliative care.
I think the term is being co-opted for only assisted suicide/euthanasia. It is pretty clear that the term is being used for one thing. That's all some of us are pointing out - that it makes it sound like euthanasia is the only way to die with dignity. It is a "Death with Dignity" movement.
Just read this about Brittany Maynard's husband "The husband of death with dignity advocate, Brittany Maynard, who ended her life this weekend, said that when he met Maynard he had found "the person I want to spend the rest of my life with."
Just read this about Brittany Maynard's husband "The husband of death with dignity advocate Brittany Maynard, who ended her life this weekend, said that when he met Maynard he had found "the person I want to spend the rest of my life with."[/quote']I'm not sure what you're pointing out here. Of course he wanted to spend the rest of his life with her. Unfortunately, he was robbed of that. And not by her. By disease.
Have you ever witnessed the decline of a person with a glioblastoma? It's not pretty. There is nothing dignified about it. Before the person dies they lose their "self," their identity, their awareness, everything that makes them the person that they are/were. A member of my family recently died of this terrible condition. The deceased person's family was traumatized by the suffering they witnessed at the end. The person had hospice services. It didn't make the end easier to bear for anyone involved.
Compassion and Choices is not fighting for sublingual morphine and atropine for all. They are fighting for the right of a terminal patient to decide how and when their end will come, the right to throw off this mortal coil under their own terms, with their identity still intact. I support this right, and hope to have it for myself if the time ever comes.
The thing with end-of-life, is you have to take into consideration religions in the afterlife if people believe in that. As a Christian I say my life is not my own I belong to Christ. I understand everybody is not a Christian. I'm just throwing out my two cents. (I don't want to start a religious fight)
I don't want to start a religious fight either. I just want to point out that Christianity is a belief system that is not universal. My religious upbringing tells me that my life is my own. There is no prohibition on ending it.
The needs of the patient are paramount. Self-determination is everything. If a patient wants to end his or her life, who is the medical provider to say no? Why would the state have a right to say no? People who want to die can always find a way to do it. I think it's better to allow a dying person to choose an overdose of barbituates rather then the violence of a gun, or the agonizing, slow death that comes with refusing food and hydration.
The hospice nurses who cared for my grandmother several decades ago waited until my flight got in from another state, then gave her an overdose of morphine after I had a chance to say goodbye. I watched them do it. I didn't understand what they had done at the time, but now that I'm a nurse, I do. It happens every day, even though it isn't out in the open.
PS - the fact that this option is available does not mean that ANYONE has to use it. But the fact that it is not available means that no one can. It should be an available choice.
The thing with end-of-life, is you have to take into consideration religions in the afterlife if people believe in that. As a Christian I say my life is not my own I belong to Christ. I understand everybody is not a Christian. I'm just throwing out my two cents. (I don't want to start a religious fight)
I think it's a mistake in general to use the term "death with dignity" as a stand-in for "assisted suicide." If used in that way, it seems to imply that going through the course of an illness until its natural end (when a person may become incontinent or confused or whatever) is "death without dignity." That's not true.
Really, though, death isn't the most 'dignified' thing any of us will ever do, and birth isn't, either. We're human. But both events have profound meaning that goes way beyond the physical act involved. Even if they're not entirely 'dignified,' that does not take away the dignity of the person involved.
On the other hand -- Allowing a person to suffer needlessly is an indignity, which means "an affront to human dignity." I was a hospice nurse for several years, and what "death with dignity" means to me is dying without affronts to human dignity, such as being left to suffer with intolerable pain or ignoring wishes regarding treatment.
When I was an ICU nurse, I saw a lot of indignities. In hospice, I did not. To me, hospice isn't so much about "death with dignity" (whatever that means) -- it's about death without indignity. It's about honoring a patient's wishes and controlling their symptoms to their satisfaction. The vast majority of the time, symptoms can be controlled. When that is not possible, 'palliative sedation' or 'terminal sedation' -- also known as "sedation for intractable distress in the dying" -- is an option. This is NOT assisted suicide nor euthanasia. Palliative sedation is an option of last resort for patients whose symptoms cannot be controlled by any other means. The goal of palliative sedation is to control symptoms through sedation, not to shorten the patient's life.
I support the right to choose assisted suicide when the process is carried out carefully, as it is in Oregon and other states that allow it.
At the same time, though, it seems sad to me that a person would choose it because they feared losing their 'dignity.' But then again, dignity is a very subjective thing. Even so, I wish everyone would give hospice a try before going the assisted-suicide route. Hospice care, when done well, can make a HUGE difference in the last phase of life in so many ways.
canigraduate
2,107 Posts
This topic is very emotional for me at the moment. Three people in particular have caused me to have a particular opinion.
My mother had breast cancer with mets to most of the bones in her body and some in the lungs. The pain was excruciating. The pleural effusion from the mets to the lungs caused her to have frequent pneumonia. She was emphatically DNR. She was admitted last January for PNA and was emergently intubated in the ER. When she got to the ICU, she was unable to get the staff to understand that she wished to withdraw care, so she self-extubated. They intubated her again. Finally, she got a nurse who was able to understand what she wanted, they called my family in, and she was allowed to die. I hate that she had to go through intubation, when that was not what she wanted. The family member who took her to the ER didn't have enough knowledge to ask for a "Do Not Intubate" order. I was in another state and wasn't able to participate in her care, except by phone, when they called me after the fact. I still have guilt over it. If she had been given the choice, she never would have been intubated in the first place.
I also had two patients who asked me to kill them. One was suffering from chronic osteomyelitis who had already been through amputation and had had enough. This patient was slowly rotting to death. Another was a nonagenarian who was suffering excruciating pain and simply wished to spare self and family from any further suffering.
These two had been fully briefed on hospice and palliative care. They had psych consults. No treatment options were left unexplored. One chose to go to inpatient hospice, the other mercifully died in the hospital. However, neither was satisfied with the options open to them. Neither saw the need for further suffering on their behalf. Neither felt like they had any quality of life. Neither had a choice. I think it was the inability to choose that makes me upset for them.
I have told my husband several times that if I ever die, let me stay dead. And if I get certain diseases, unless I specifically ask, don't trach/PEG/intubate. I have had enough experience caring for some patients and families that I couldn't put myself or my family through some things.