A study published recently in JAMA Network highlights the need for improved pediatric advanced care for adolescents with terminal cancer. The research reveals a gap in understanding between parents and children when initiating and discussing critical conversations about end-of-life decisions.
“Advance care planning interventions are needed to improve families’ awareness and understanding of their teens’ end-of-life choices,” says principal investigator Maureen E. Lyon, Ph.D., a Children’s National Hospital clinical psychologist.
“Teens need to have a voice in their care and families are eager to know what their teens want, but those conversations can be difficult,” says Dr. Lyon. “Advance care planning interventions for parents and adolescents create a space where they can ask questions and be honest with each other.”
While families with adolescents with cancer are often spinning with the daily struggle of life, the authors say that clinicians presume that families understand adolescents’ treatment preferences for end-of-life care – and this can cause miscommunications. As has been seen not only in the pediatric setting, a lack of advance care planning is associated with increased hospitalization, poor quality of life, and legal actions.
The study involved a survey of 80 adolescent-family dyads (160 participants) from four tertiary care U.S. pediatric hospitals. From July 16, 2016, to April 30, 2019, the families were exposed to Family-Centered Pediatric Advance Care Planning for Teens With Cancer intervention sessions.
The results showed that family members’ understanding of their adolescent’s beliefs about the best time talk about end-of-life decisions was poor, with 86% of adolescents desiring an early conversation on the topic (before getting sick, while healthy, when first diagnosed, when first sick from a life-threatening illness, or all of the above), but with only 39% of families understanding this. This was particularly when it came to the topics of dying a natural death and being off life-support machines. Nevertheless, families’ did seem to have an excellent understanding of what was important to their adolescents in regards to wanting honest answers from their physician and understanding treatment choices.
The findings from the study can be found here in the article “Congruence Gaps Between Adolescents With Cancer and Their Families Regarding Values, Goals, and Beliefs About End-of-Life Care.”
Nurses crying. That’s what I hear from the front lines treating Covid-19 patients. A nurse will begin the shift crying and end it crying. Crying. And we are not a profession that cries easily.
“Untenable” is how the sister of Dr. Lorna Breen, a physician in New York who died by suicide in late April, described her sister’s work situation. She was right. In hospitals with Covid-19 patients, understaffed clinicians often lack sufficient personal protective equipment and tests for the virus, and they fear for their own lives. These conditions would wear on anyone. But they amount to a staggering burden for doctors, nurses and health workers of all kinds whose deeply ingrained duty is to save the lives of their patients.
These medical workers remain devoted to curing and easing the pain of the desperately ill. But what can be done about their pain? Their feelings of failure? Frontline clinicians all over the country are experiencing anxiety, insomnia, a sense of acute inadequacy, and feelings of being betrayed by hospital administrators. Many will likely end up with PTSD. Helplessly watching so many people die, especially when many of them die without their loved ones present, is professionally “untenable.”
We know there is no universally effective treatment for the sickest Covid-19 patients. But their deaths are clearly not the fault of their caregivers. Is it possible to ease clinicians’ burdens so that they feel less personally responsible when these patients die? I believe that another type of care situation, that of a hospice, may offer some lessons.
The most fragile Covid-19 patients are not unlike hospice patients: There is no cure for their condition. While they differ from hospice patients — their deaths often come on suddenly and cannot be foreseen — clinicians might more easily make peace with their deaths by viewing them through a hospice lens.
Even though we are all going to die, death fits uneasily into the world of health care. Fundamentally, health and healing apply to the living, not the dying or the dead, and helping the living get better is why most nurses and doctors got into this work. When I worked in oncology, I saw this principle acted out by physicians who viewed death as failure, and nurses who equated talking honestly about bad prognoses with destroying patients’ hope.
Hospice care approaches death very differently. Practicing as a nurse in home hospice, I understood that patients were going to die. The goal was for them to have the best life possible for as long as possible and to die with minimal distress. Some people associate hospice with “giving up” on dying patients, but that is mistaken. Hospice staff do not hurry death along. Rather, hospice clinicians concede that curative treatment either does not exist for, or has been declined by, the patient, and accept that patients will die under hospice care.
As a hospice nurse, I managed symptoms — pain, trouble breathing, delirium — treated wounds, listened to stories from the past and acknowledged hopes and fears for the future. My intention was that all of my patients would leave this earth without suffering, and though that wasn’t always possible, I tried.
People often say that hospice nurses are angels. I tended to demur and say, “Nope, I’m human.” What the praise shows, I think, is that being comfortable with death is unusual. “Comfortable” is the wrong word: I accept death. I accept its inevitability, but also its importance. Death is the end of each person’s time on earth; it is a privilege to care for people in that moment. I embrace the cycle of life while recognizing the sadness of every death.
(That acceptance is somewhat conditional, though. Two and a half years ago, when I was diagnosed with breast cancer, I chose to take a leave from hospice work. My diagnosis brought the cycle of life a little too close.)
What’s more, a century ago, all of us would have been much more familiar with death than we are now. There were no high-tech emergency departments or I.C.U.s; most people died at home. Modernity made it possible to hide death in hospitals, behind beeping machines and snaking tubes and wires. But now that the entire world is threatened by a previously unknown virus, death has once again come closer.
I am not suggesting that health care workers become indifferent to Covid-19 deaths, or that a certain amount of death from this disease should be callously dismissed as inevitable. No. Instead, I’m urging nurses and doctors to feel less overtly responsible when Covid-19 patients die. As a hospice nurse, I never experienced a patient’s death as failure. Some deaths seemed unjust in a universal sense, like a young mother succumbing to cancer or a dying patient saying she was denied the full scope of cancer treatments because she was black. But the trajectory toward death — I accepted it.
When a patient dies on home hospice, a hospice nurse legally pronounces the death by calling the medical examiner and getting the body released. At pronouncements I did the required paperwork, and I also helped hold, or emotionally contain, the death for everyone gathered. I witnessed the ending of a cherished life and honored loved ones’ grief.
Hospital staff caring for Covid-19 patients need someone to help them hold all the deaths. It is too much to feel responsible for so many imperiled lives, day after day, to rub up against one of the most challenging and often unacknowledged paradoxes of modern health care: Even though we work very hard to heal people, sometimes they still die.
It might be possible to plant a hospice nurse in every Covid-19 I.C.U., but frontline clinicians can also do the work of acceptance by admitting that despite their training, intelligence, tenacity and technology, patients will continue to die of Covid-19. That fact is tragic, and knowing that the mortality rate has been compounded by the failings of our health care system doesn’t help. But it is still possible that the sum of human suffering in this situation can be lessened if nurses and doctors put the blame for their patients’ deaths where they belong — on the virus, not on themselves.
Visitors are typically restricted, which means that family members of some coronavirus patients are prohibited from being with them in their last days, unable to touch or hold their loved ones. This scenario is only expected to get worse. According to the Institute for Health Metrics at the University of Washington, as many as 82,000 people in the United States could die from the contagion, while other models show up to 125,000 people. Many health facilities—from traditional hospitals to makeshift alternative care sites—will have to decide how best to provide dignified end-of-life care to COVID-19 patients and their loved ones.
The two of us have collectively worked in healthcare architecture and research for more than 30 years and have worked nationally and internationally on palliative care solutions in a variety of healthcare settings. We also both recently lost loved ones. We know firsthand how important compassionate end-of-life care is. Yet existing guidelines from Centers for Disease Control on alternative care sites—the very places many acute COVID-19 patients are dying—do little to address it. Here’s how traditional and nontraditional care spaces alike can create safe, comfortable end-of-life experiences, even when resources are stretched thin.
A comfortable environment
Having a degree of privacy is crucial so that each patient can say goodbye to loved ones or have religious rites. This can be done in-person or, more likely these days, virtually. (Some facilities do allow a visitor for end-of-life cases, with the provision that visitors wear personal protective equipment.) Normally, patients get a private room, but many hospitals are overrun and simply don’t have the space. Instead, hospitals and makeshift medical facilities could provide a simple curtain or a divider between beds.
Establishing protocols for visits is important, so patients and family alike know what to expect. Facilities should clearly communicate whether visitors are allowed in person or virtually, what visiting hours are, how many visitors are allowed, and what sort of screening they need to pass. There should also be clear direction around mementos or spiritual items that family may want to pass to their loved one: Are they allowed or not? How should they be handled?
Support two-way communication
If family members are not allowed to visit physically, care centers can support other ways loved ones can say last goodbyes, such as two-way video communication, or visual contact through a protective barrier, like a window.
Personalized acoustics or comforting nature sounds can go a long way toward making a patient feel comfortable. Many of the makeshift hospitals that have been built to support COVID-19 patients are bare bones and don’t support elaborate sound systems. But headphones or bed speakers can work just as well. When patients are conscious, access to sunlight, nature, or images of nature can also be soothing.
Dedicated hospice workers can manage the caring aspect of end-of-life care when resources across the system are under siege. Staff qualified to tend to very sick patients should remain in those designated areas.
How to create a safe environment
Building dignity into end-of-life care is only part of the solution. Care facilities also have an imperative to prevent spreading the virus further. Here are some key considerations.
Narcotic drugs should be securely stored but located so caregivers can reach them easily. The medication may be placed in a locked cabinet at a designated staff workstation near patient care areas, for instance.
For facilities that allow family members to say their final goodbyes in person, providing a dedicated entry to the space can reduce the chance of transmission. Mobile handwashing stations can also be provided throughout the facility. Donning and doffing zones should be established for any staff and family members entering or exiting the facility.
Dedicated toilet rooms and respite areas can be provided for healthcare workers. The death of a patient can be difficult for even the most experienced caregivers and they, too, need space to process their pain.
When patients die, they should be removed discreetly from the facility, through a separate exit. This is not only to preserve their dignity and avoid frightening visitors and other patients. It’s the safest approach to prevent spreading the coronavirus.
None of these are new ideas in healthcare design, but as hospitals rush to treat legions of new COVID 19 patients, they have to embrace the reality that many patients will succumb to the virus and their families will suffer. There are ways to help ease that suffering in a compassionate way.
YES, we’re scared. We’re on the edge, unable to think properly. Our focus flutters and floats around flea-like from one update to the next. We follow the news, because we feel we should but soon we wish we hadn’t, because it’s sad.
The thought of dying alone with a respiratory sickness is so horrifying to hide under our masks. We are separated from one another but we can’t keep our distance from the fear of death. This led me to question, how can I accept my own mortality, so that I can live my life to the fullest during this terrifying situation?
Then I found a novella The Death of Evan Ilyich (1886), by Leo Tolstoy which helped me not only to understand the author’s philosophy towards death but also the psychology behind it. As a result, I could gather some emotional courage to embrace my fear of death during this COVID-19 pandemic situation.
Leo Tolstoy (1828-1910), a Russian writer, is regarded as one of the greatest authors of all time. He is best known for his novels like War and Peace (1869) and Anna Karenina (1877). But due to his unusual firsthand experiences of death and dying, he also wrote extensively about the inevitability of death for our understanding of life itself. Some of his most memorable meditations on this theme are found in his novella The Death of Ivan Ilyich. In the novella through the story of a dying Russian judge, Tolstoy successfully narrates the different episodes of ‘dying’ some eighty years before its discovery by Swiss-American psychiatrist Elizabeth Kubler Ross. In her book On Death and Dying (1969) Kubler Ross outlined five stages that a dying individual goes through.
The Death of Ivan Ilyich, as its title suggests, depicts the death of an ordinary middle-aged Russian judge, but it is also about a man who overcame it. Like everyone in his social circle, Ivan Ilyich lives a superficial life and dedicates his life to climbing the social ladder and seeking the bliss which he believes is found at the top. Initially he was contented with his life but gradually he becomes unhappy as his marriage deteriorates so he starts ignoring his family life and focuses on becoming a magistrate.
One day he falls awkwardly upon hanging curtains for his new home and becomes ill. Doctors offer all kinds of diagnoses and medicines but he cannot recover and within some weeks, Ivan Ilyich could see that he is a bedridden dying man. In his death bed Ivan’s main source of comfort becomes his servant Gerasim. He is the only person in the house who does not fear death, and the only one other than his own son who seems to show compassion for him.
As Ivan’s interaction with Gerasim becomes deeper, Ivan begins to question the how can he accept death without being unhappy? Gerasim guides Ivan in his last days, and allowed him to realise the difference between a superficial and an authentic life and how to accept death with ease. He says, ‘We shall all of us die, so why should I grudge a little trouble?’ Apart from the philosophical thought, Tolstoy also shows the psychological stages of a dying person.
According to Ross, denial is the initial emotional response to the knowledge of death. In this stage people often say, ‘No, not me. It can’t be!’ From chapter five we find Ivan Ilych gets the idea that he is going to die but he could not get used to the idea and immediately denies it. In chapter six he says, ‘It can’t be me having to die. That would be too horrible.’ After a while, he entered the stage of anger, blaming god for imposing this kind of misery and pain to him, and expecting an answer, ‘Why hast Thou done all this? Why hast Thou brought me here? Why, why dost Thou torment me so terribly?’
Then he started talking to god asking for the meaning of his life. During this ‘bargaining’ period he started to look back and after much argumentation with himself he realises that he may not have done anything meaningful during his whole life. Consequently he enters into the ‘black hole’ of depression. He learns that it is impossible to turn back and fight against the forces, now he can only wait for the moment.
Finally, the door of acceptance was opening in his scared mind, with his understanding of the inevitability of death. Ivan Ilyich during this stage realises that he has not lived his life in the best way and he was dead long before he was called to die. He was materialistically driven and blinded most of his life by shallow pleasures. He eventually finds solace from the selfless love and kindness from his family and servants and embraces death. ‘Death is finished,’ he said to himself. ‘It is no more!’
Therefore, The Death of Ivan Ilych is Tolstoy’s parable representing the mystery that living well is the best way to die well. Tolstoy tells us that we don’t fear death, we fear life because we feel that we don’t live our destined time on earth as we were supposed to. It also echoes with the Stoic philosopher Marcus Aurelius who told us that ‘it is not death that a man should fear, but he should fear never beginning to live’.
During this pandemic when we’re feeling the anxieties of infection and death, this story gives us the message of our capacities to respond to the fear of death in ways we never knew we could. It reminds us that, fear isn’t real. It is like wearing the uncomfortable personal protective suit around our mind and feeling we’re being protected.
In doing so, we have allowed this fear into our house, our head, and our heart. It’s circulating like the ghostly virus — looking for prey in every thought and every action. But we must remember that human is not defined by fear. We are a hope and a faith-driven species that seeks to live life to the fullest and not die.
The main challenge in reflecting on one’s own death is the way the various aspects of death and dying are intertwined which make it difficult to discern personal mortality.
First there is the prospect of me dying; of me entering whatever is in store at the end of my life. How long will it last? Will there be pain? What will I leave behind? How do I say goodbye? Next there is the prospect of other people dying, particularly the death of loved-ones and the painful absence their loss leaves behind. How would I cope with the death of a close friend, a partner, a child? But thinking about my dying and other people’s deaths are different. Dying is an event in life, admittedly an important event, but still one that happens within the course of life. Similarly, coming to terms with the loss of a loved-one is an important process, but it belongs to a different domain than my death.
Another temptation is to think of my death as though it is like the death of others. I imagine myself in the shoes of someone as they approach their death. Maybe it would be my soul that is absorbed into a zone of endless tranquility. Maybe it would be my body lying motionless in the coffin. I conjure up images of love-ones with shocked expressions as they are told about my death, I visualize their forlorn looks as they watch my coffin descending into the grave and I picture their reactions to constantly interacting with the spaces I now no longer occupy.
But thinking about my death in terms of what happens when others die does not fully capture what happens when I think about my own death. When I die, looking at myself from the outside, my brain will stop working, my senses will cease to operate, I will no longer have any voluntary control of my muscles, and my body will lie limp and lifeless. This is undeniably what will happen.
Looking at this from the inside is more complicated. If my brain and my body cease to function, then it makes sense to consider my emotions, my consciousness and all those aspects that make up my subjective world, as ceasing to operate as well. My consciousness surely relies on input from my senses plus the processing power of my brain, so without them it is hard to think of how consciousness might persist. I might reassure myself that my consciousness will continue in some form in another realm, but I can’t be sure. It makes more sense to say that when all the conditions for consciousness are no longer present then my consciousness will no longer be able to function.
But this is a terrible thought; a horrifying realization with alarming consequences. My consciousness is always present whenever I look out at anything in the world. I never experience anything around me without being conscious. When I am unconscious, such as when I am asleep or knocked out, I assume the world continues under its own steam, but this is an assumption which I can never fully trust. What I can be surer about is that the world and my consciousness are always paired; they are always together, each interacting with and enabling the other, and participating together in allowing what is going on around me to continue to take place.
What this throws up is the possibility that without my mind the world, and all that it contains—objects, animals, people, loved ones—will cease to exist. In other words, from the standpoint of how I experience things, when I die the conditions that enable the existence of both my consciousness and the world around me will, most likely, no longer be present. In this way, the prospect of my own death highlights the possibility of the end of everything.
The unthinkable and unspeakable nature of my death forces me to walk repeatedly down a conceptual dead-end; a dead-end which discourages any further attempts to think along the same track. Even if we were to consider it important to form some sort of relationship to my death, there is no identifiable object to connect with, there is nothing to cling on to; it stands there as a conceptual black-hole; an emptiness which we can only approach with insecurity and foreboding.
Here lies the true challenge of reflecting on my death; the idea of it as an unthinkable, unspeakable nothingness. But, despite this, thinkers, poets, and artists have, over the centuries, still had a lot to say about personal mortality. It is just too big a part of the rhythm and structure of life to be ignored.
It is, similarly, important for each of us not to turn our backs on death and, despite its unintelligibility, to seek out ways of engaging with it. What is needed is some sort of provisional handhold that allows each of us to reach out and grasp onto something that can enable us to pursue a lifelong relationship with personal mortality.
The coronavirus pandemic has brought death and dying to the forefront of the public’s consciousness.
As an anaesthetist working in a London intensive care unit, it is part of my daily life. Within a matter of weeks it has become everyone’s business.
Throughout my career I have been involved in the care of critically-unwell patients. All intensive care doctors accept that in spite of our best efforts, some people will not survive.
Whilst our primary goal is to support patients to recovery, we must also ensure that patients who are no longer benefiting from intensive care are supported too, so they may die without discomfort. This is true of any intensive care ward, at any time, but Covid-19 has further highlighted the importance of good end of life care, as we are seeing record numbers of very unwell people admitted to the hospital.
When the intensive care team is called to admit a patient, we try our best to establish their wishes with regards to treatments.
Have they thought about intensive care and life support? If their heart or breathing was to stop, have they thought about whether they would want the medical team to attempt cardiopulmonary resuscitation, for instance?
Whenever we can, we explain clearly what the treatment options are and the risks and benefits of each; we ask them what their own priorities are and answer any questions they may have. Then we adjust the treatment goals to best suit that individual patient.
But sadly, there are times where this communication is not possible and both the team and patient are robbed of that opportunity. That is why I am so passionate about what is known as advance or anticipatory care planning, or what I prefer to call advance life planning.
This is where people are given the opportunity to talk through their priorities and concerns for the end of life and translate them into a plan for their future care and treatment. This may include a Living Will (a legally-binding document also known as an Advance Decision or Directive) to refuse certain treatments and an Advance Statement to record other preferences for care.
People may also wish to nominate a trusted person to make healthcare decisions for them if they become unable to, using a Lasting Power of Attorney for Health and Welfare. These documents are then shared with healthcare professionals and loved ones.
I appreciate that in these uncertain times people can feel powerless and voiceless, but advance care planning can empower you and ensure your voice is heard clearly
All intensivists can recount a story in which, acting in good faith, a patient was put on to full life support, only to subsequently learn from loved ones that this action was against that patient’s end of life wishes.
This is not only heart-breaking for all involved, going against our core belief to ‘do no harm’, but it also denies that person the chance to be kept comfortable in a place of their choosing to say a meaningful goodbye.
This pandemic means we can no longer shy away from death. It is an inevitability of life and conversations about death should no longer be taboo.
It is now more essential than ever to talk to our loved ones about what a good death would mean to us as an individual.
For some, the most important thing might be remaining as pain-free as possible. For others, the priority might be to remain as lucid as possible until the end, or dying in a place of their choosing, whether that is at home or at a hospice, surrounded by their loved ones.
Some may want to accept all efforts to keep them alive as long as possible in spite of the risks. An Advance Statement can record information like this, and while it is not legally-binding like a Living Will, it should be taken into account if decisions need to be made on your behalf about your care and treatment.
I appreciate that in these uncertain times people can feel powerless and voiceless, but advance care planning can empower you and ensure your voice is heard clearly. It also assists medical professionals like myself to continue to act in the best interests of our patients by respecting their wishes.
By recording them as clearly as possible now and sharing them with your family and your GP, you will be far more likely to get the care and treatment that’s right for you when the time comes.
Know that if you do want to put plans in place, you are not alone.
The charity Compassion in Dying – for which I am clinical ambassador – aims to help people prepare for the end of life; how to talk about it, plan for it and record their wishes.
The MyDecisions.org.uk free site, which guides people through different scenarios so they can record their wishes for future care and treatment, has seen the number of completed Living Wills in the last month surge 160 per cent compared to the same period last year, and completed Advance Statements are up 226 per cent.
One might therefore conclude that the coronavirus is prompting people to consider and record their wishes for the end of their lives – some for the first time – and that is to be welcomed.
These are unsettling times, but know that healthcare teams in hospitals will continue to work hard to care for our patients, whether that means supporting them to a full or partial recovery or enabling them to have a dignified death.
For those who have already taken the time to document their wishes for the end of life, I am thankful. To those who are thinking about it, I appeal to you to do so.