Pam Munro made the last days of her life public because she wanted people to know they could choose how and when they die, as she did.
The 62-year-old Blaine woman died July 17 – at home and surrounded by family and friends, 12 days after she voluntarily stopped eating and drinking instead of waiting to lose her mind and dignity to Alzheimer’s disease.
Bellingham resident Phyllis Shacter has been fulfilling the promise she made to her late husband, Alan Alberts, that she would share his decision to end his life by voluntarily stopping eating and drinking, or VSED, rather than entering the late stages of Alzheimer’s.
He died in April 2013, about 91/2 days after he refused food and water.
“How we die and what we say we want at our death is extremely important,” Shacter said, adding that Alberts died peacefully and consciously. “I want to have a good death. Who doesn’t?”
Both Munro and Alberts stopped drinking and eating when they still were mentally competent to do so. For those who choose this final exit, death usually occurs within one to three weeks.
People die from the effects of dehydration, which shuts down their kidneys and sends them into a coma, before they do from starvation.
In an interview in the days before her death, Munro said that reading a story in The Bellingham Herald about Alberts’ decision and hearing a talk Shacter gave about it – both occurred in September 2015 – made her decide that was how she would die.
Munro wanted to remind others who were ill of that choice, while they still had the ability to make it.
“You’re lost,” she said, “and then it’s too late.”
Her husband, Steve Munro, 66, said in an interview on Sept. 26: “I understood her fears. She didn’t want to be a vegetable, not know who people were.
“My job as a husband was to support what she wanted to do,” he added. “It wasn’t my choice. It was her choice.”
Growing awareness
Deciding to hasten death by refusing to take food and liquids will be discussed at two events this month.
The first is on Oct. 14-15, at Seattle University School of Law. It is believed to be the first national conference on VSED, and it will delve into legal, ethical, religious and other considerations around the topic.
Alberts’ and Pam Munro’s decisions to go public with their choices are helping to bring greater attention to VSED as an end-of-life option, including for those who are terminally ill but don’t qualify for Washington state’s Death with Dignity measure, or don’t live in one of the five states that allow it.
Washington state’s law went into effect in March 2009. It allows terminally ill adults who have been told by their doctors that they have six months or less to live to ask for a prescription for lethal doses of medication.
Patients making the request must be mentally competent, must ask twice verbally and again in writing, and must be able to take the medication themselves. They can rescind their request at any time, and they must reside in Washington state.
The decision to forgo food and water has been recognized by courts, as long as the person making the decision is competent at the time.
Even though it’s an option in all 50 states, VSED hasn’t received as much attention as the hot-button topic of Death with Dignity.
He will be speaking at the VSED conference in Seattle. Meanwhile, End of Life Washington is assembling a team of people who will focus on it. The Seattle-based organization helps people plan for the last days of their lives.
Certain Death with Dignity requirements prevent people with Alzheimer’s and other forms of dementia from using the law when they enter the advanced stages.
Alzheimer’s attacks the brain. It is a progressive, irreversible neurological disorder that is the most common form of dementia. Most victims are older than 65, but Alzheimer’s can strike in the 40s or 50s.
Symptoms include gradual memory loss, impaired judgment, disorientation, personality change, difficulty in learning and loss of language skills. There’s no cure, though treatment can temporarily slow the worsening of symptoms. At the end, those with Alzheimer’s have to depend on others to take care of all their daily needs.
It is the sixth leading cause of death in the U.S., and people with Alzheimer’s live an average of eight years after their symptoms become noticeable to others. But survival can range from four to 20 years, according to the Alzheimer’s Association.
More than 5 million Americans have Alzheimer’s and that number is expected to skyrocket to as many as 16 million in 2050.
A window of time
VSED isn’t without controversy. Not everyone in Pam Munro’s family supported her decision, and some believe that hastening death this way is suicide.
Patients must be mentally competent, or in their right mind, to forgo food and drink. They must be able to indicate that they know doing so will lead to death, as Pam Munro did in written statements that were part of the documents she filled out as she planned for the end of her life.
Timing is important. People who choose it don’t want to start and die too soon. But if they wait into the advanced stages, dementia might make them forget that is what they wanted for themselves when their lives became unbearable.
“That window was getting smaller and smaller. Her Alzheimer’s was progressing quickly,” said Ashley Benem, a Bellingham death midwife who was helping guide and monitor Pam Munro in the last months of her life.
When Pam Munro was ready, she started eating less and then moved into a juice-only fast. Because of her Alzheimer’s she didn’t have much appetite anyway. A friend made her her last meal, a green smoothie. She stayed hydrated until the day she started VSED.
She had medical support from her doctor, who gave her a prescription for medication for pain and anxiety should she need it. She received foot massages and back rubs, spritzes of water to help relieve dry mouth, and a rotating shift of friends and family to be with her as she waited to die the way she wanted.
“I have never died, so this entire book is a fool’s advice,” writes Sallie Tisdale at the start of her latest work, Advice for Future Corpses (and Those Who Love Them): A Practical Perspective on Death and Dying. However, there’s wisdom in knowing that you don’t know it all, and Tisdale’s enchanting prose searches as often as it instructs. In addition to being a writer, Tisdale is a Buddhist practitioner and teacher, a nurse, and an end-of-life educator who leads workshops on preparing for death; her depth of experience at the side of the dying is apparent throughout.
In these essays, Tisdale tells of the death of her Zen teacher, her mother, her close friend Carol, and others she has known, and asks questions many of us avoid: How do we define death? How do we manage physical pain or grief? Does our dignity depend on our health? This book, Tisdale writes, is meant to help you prepare for your own death and the deaths of those closest to you. It’s a travel guide to the end of life, a map of the territory, not a book of spiritual guidance. At its close, Tisdale even offers four appendixes for those seeking advice on the practicalities of death preparation. “My Death Plan,” “Advance Directives,” “Organ and Tissue Donation,” and “Assisted Death” prompt readers to consider their preferences for pain management, rituals and services, burial place, funerary rights, and more.
“If you die once, you will never have to die again,” Tisdale told Tricycle in February, recalling a teaching she heard when she was a young Zen student. At the time, she found the sentence perplexing. But as her practice progressed, the deep sense of release that she experienced—a “falling away of body and mind”—encouraged her to continue, and eventually led to the understanding that one can meet death as wholly as one aims to meet life. In the interview that follows, she tells Tricycle how she cultivated familiarity with her own mind while tending to her patients and loved ones, and why considering our own death just might make us happier.
—Marie Scarles, Associate Editor
Why did you feel compelled to write this book? I’ve been leading workshops and small groups about preparing for death at my Zen center for about a decade. I started to hear that people in other groups wanted to see the syllabus and material I was using. So I thought I could develop it into something that would be comprehensive and useful for people.
Preparing oneself to die is an inescapable challenge. It is also part and parcel of religious practice. I’m struck by the fact that as Buddhists we know this and yet it doesn’t come up in conversation all that often. We self-censor. We think, Oh, if you were a really good Buddhist you wouldn’t have those feelings, you’d wouldn’t have that fear, you wouldn’t be confused, you wouldn’t be struggling. You’d have it all figured out. This is very damaging to us. Our practice is about authenticity, rigorous self-examination, and honesty. If we’re honest, we’re going to admit that none of us is quite ready to die.
In the book, you write that when we’re speaking with someone who is dying, we need to avoid telling them what they should do or how they should feel. Are these “shoulds” another form of censorship? I’m going through this with a friend right now. I was with him last night, and one of the things that he’s really struggling with is his deep fear of self-extinction. I have to bite my tongue not to try to reassure him, not to try to take the fear away from him, but to let him explore it and feel it. It’s his, and his perspective on it is very different from mine. It’s not my life.
It’s so easy for us to pop in and say, “You should be feeling this,” or “Of course, you want me to do and say this.” But when we do, we’re missing the fact that nothing is more intimately the result of your whole life than how you meet death. We have to notice our urge to put our own veneer on someone else’s experience.
I’m sure I’m less uncertain and awkward than most of the people in the room, but I am still awkward and uncertain at times at that bedside: I’m not sure how to answer a question, or I’m looking for comfort with the silence, knowing there’s nothing to be done about certain things. I’m still just trying to meet the experience all the time, and stuff comes up for me, of course. It does for all of us. But it’s really myself that I’m encountering, the ways I think it should be. This is the way I want it to be for me. That fundamental egotism is still there, even at somebody else’s deathbed. You have to continually notice this fundamental egoism.
I imagine this process of getting to know your own experience—as well your nursing work—has helped you navigate encounters with death. Of course, every death is different. Yet there are remarkable similarities. We’re not that different from each other. You can really predict and expect certain things with the deaths from chronic illness. Even with sudden deaths, once the moment of death is reached, it’s the same moment. It’s something you recognize if you’ve seen it before. It’s like that line in the Theravada version of the Mahapari-nirvana Sutra where Ananda says that the hair on the back of his neck stood up when the Buddha died. There’s something we recognize there that goes really deep.
I also want to say that I had a lot of fun writing this book. I feel a lot of joy in the face of the preciousness of life—a kind of silly joy at times. Not only are there these rituals of crying and role change that every culture has around the deathbed, there’s also a deep worldwide culture of laughing at death, making fun of it, joking about it. I think it’s because it puts us face-to-face with the deep love that we feel for each other.
This reminds me of a 2007 study you mention in the bookthat says thinking about our death makes us happier.Yes, but they explained this happiness in a different way. They’re talking about terror management theory—the psychological belief that it is fundamental to human nature to be terrified of death and that you can’t escape the terror. Terror management theory states that you can’t not be afraid of death. I don’t believe that. I think we are all afraid of it until we know it. When we really know it, that’s what spares us from the terror. Terror management theory says that this is part of being human, and that we do a tremendous number of things to distract and protect ourselves from this fear. I think we’re healthier than that. In the Buddhist sense, we have the potential to be as healthy and whole around this as around everything else in our life.
An awareness of death comes and goes. We’re hyperaware of it at one moment, maybe when someone close to us is dying, and then it fades away again. How do we get to know death, or maintain this sense of awareness? I’m a Zen practitioner, so the language I’d use here is “the falling away of body and mind.” If we become familiar with what it means to arise and fall in every moment, if we become familiar with the emptiness of the purported self and we come to accept ourselves as a loosely cohering set of compounded things, we don’t believe in the self all the time. Of course, we constantly forget and remember this again, but over time we do become more familiar with ourselves as impermanent, and eventually we come to see the glory of that. The grace of impermanence is that we belong to everything, that we are not separated from anything, that we are not isolated. As I say in the book, we may be waves on an ocean, but we are waves that know we are waves. That’s what I mean by really getting to know death. It’s not just spending time at a bedside, being with people who are facing death, getting to know your reactions to it. In a practical sense, this can be very helpful. But the most effective thing in getting to know death isn’t being with dying people, but sensing myself as being a continually dying person.
There’s a saying I’ve been told as long as I’ve been practicing: “If you die once, you will never have to die again.” I heard that when I was very young, and I didn’t know what it meant, but I do now. When I first experienced the falling away of body and mind, even a tiny bit, it was as though I had been a tightly wound spring, and I thought, I’m going to continue to unwind forever. There was such relief and relaxation and peace in the realization that this constriction would keep letting go. I could just look forward to more and more relaxation. Throughout my life I have continued to feel that spring unwind, a little bit at a time. We have as many lifetimes as we need to get there. [Laughs.]
Still, I will feel afraid when it’s my time, when I get that bad diagnosis and I’m on that doctor’s table. I’m sure there will be resistance and fear. So let’s admit it: The resistance is there. The denial arises. Admit that. But there will also be curiosity and wonder at the point of facing death, just because I have looked at it enough.
Your experience as both a dharma teacher and a nurse comes through in the book: you’re writing from the perspective of someone who has witnessed countless deaths. Yes, but that doesn’t mean that I don’t feel uncertainty and awkwardness as well. We bring our whole self there. It’s significantly easier for me to do this with a client than a friend.
When my mother was dying, my siblings looked to me like, Well, you can take care of her. And I had to say, No. I’m the daughter here. I have to be the daughter here. Sometimes, no matter how much practical experience you have, you have to bow to the fact that this is not your role this time. You need to be the daughter or the mother or the friend. Most of us will lose some friends, our parents, our siblings—but not that often. So it’s always okay to be who we are in these moments. It’s always okay to have the weaknesses and the confusion and the questions that we have. It’s always all right to just say, “I don’t know. I’m not sure. I’m scared. I’m worried. I’m afraid of this. I’m not sure what to do next.” It’s okay for all of those feelings to be there. We really will trip ourselves up if we think we have to have it all together.
I was thinking about this last night while sitting at the bedside of my friend, someone I’ve known for 40 years. He’s really scared to die. We learn in our practice to deal with our own suffering. We learn to recognize other people’s suffering, and we learn to see the sources of suffering. But it’s really hard to learn that you can’t take somebody’s suffering away from them. It’s important that we remember the bodhisattva Guanyin, she who hears the cries of the world. She’s the witness; she’s not fixing everything all the time—she is just seeing it. There’s so much we can do for each other, but we can’t do it all. It’s not possible to entirely comfort and console another person. They have—we have—to feel pain. It is part of this life.
Caretakers’ Dos and Don’ts
An excerpt from Advice for Future Corpses (and Those Who Love Them)
If you are dying, you can say anything you want. You can say it when you want, and to whom you want. And you don’t have to say anything at all. Most of what I offer here is for the visitor, the companion, the helper. You have to follow some rules.
Think about how you explain ordinary information: the washing machine is on the fritz, we’re out of milk, I got a parking ticket today. Then think about how you communicate more urgent news: I wrecked the car. The power’s out. It’s different. Consider how you react in an argument. That’s different, too. Do you shut down, stop thinking? Do you start to cry or yell or leave the room? We all have a pattern for difficult conversations. If you are going to spend time with a dying person, know how you handle emotional scenes. What scares you? What makes it easier? Make a list. Practice!
Listening isn’t that complicated. It’s hard, but it’s not complicated. Few of us communicate really well. We think explaining ourselves is key, but listening is the most important part. Half the energy of caring for a dying person is listening, really listening. We are driven to think of ourselves first, and spend half the time appearing to listen while we prepare what we are going to say when it is our turn to speak. So: Listen. Say: This sounds very difficult. Say: I can tell how much thinking you’ve done about this matter. Say: Um-hmm. Tell me more. Keep bringing your mind back to the present moment when you stray. Invite detail. Ask questions and make it clear that you want to know. Anxiety makes it difficult to remember information, so repeat yourself if necessary. Speak in a calm and unhurried way. Reflect what you’ve heard, because you might have heard wrong: It sounds like you are saying you are afraid. Clarify, because you might have heard wrong: Let me make sure I understand. I think you are saying . . . If you can do these things, you are almost there. Be calm. Be nonjudgmental. Repeat.
If you are spending time with a person who is dying, you become a protector. You are the defender of modesty, privacy, silence, laughter, and many other things that can be lost in the daily tasks. You are the guardian of that person’s desires.
You will become a gatekeeper. Everyone needs a gatekeeper! Be the one who can say with a smile, Goodbye, Aunt Lucille. The one who can reach out a hand to the visitor and say, Time to go. We’ll call when we’re ready for another visit! while walking to the door.
Visitors come in many forms. Lots of friends will just drop in for a cup of tea and a few innings of the baseball game and take the garbage out when they go. Hurray for those friends. But you may also meet what the writer Glennon Doyle Melton calls the Fixer. This is the person who is certain that my situation is a question and she knows the answer. The Fixer is on the edge of her seat, ready with the solution. Melton went through a difficult breakup, and so she also knows the Comparer: the visitor who only appears to listen, who is just waiting for the chance to explain how his experience, or his nephew’s experience, or his aunt’s boyfriend’s cousin’s experience, compares to yours. Sooner or later a visitor arrives with what I think of as one-downmanship: the person with the sad face who spends their entire visit explaining why their troubles are worse than yours.
Set boundaries—for visitors, but also for yourself. Start with setting the boundaries for the visit, and do this every time. Say, I can stay for an hour, or I’ll be here until dinner, when Mary arrives. Before you leave, tell the person when you will be back. This removes the uncertainty, the unbounded edges that can make for a stressful conversation. A boundary gives both of you a space in which to be together. If you’re going to be coming regularly, you might offer a frank contract: when you will be there, for how long, to do what. If you can’t stand daytime television, can you watch Days of Our Lives anyway? If you don’t like cigarettes, can you sit easily with someone who smokes? Don’t say: I told you to quit smoking.
There are lots of ways to help besides making soup and sweeping the floor. (Those are often good things to do.) You can help people write letters or arrange a meeting. Offer to buy groceries or do the laundry, drive to an appointment or organize the bills. Offer only what you can deliver: I will stay with you through the night, or I will mail these letters for you. Be specific. (Then do what you say you will do. Not to put too fine a point on it, but you only get one shot at this.) Write all these things down and put it on the refrigerator. Your friend has enough to remember without keeping track of the calendar. Don’t say: Be sure to keep me posted.
Ask permission for everything. Be aware that you have the power here. (Be willing to discuss this fact.) Ask permission until your friend says, Quit asking for permission. Ask if a person wants to talk before you plunge in with the news of the day. Would they rather listen to music or play checkers or watch The Walking Dead? Do they want to take a shower? Do they want to eat something? If so, be clear. Vanilla or chocolate ice cream? is easier to answer than Is there anything you want to eat? Always ask for permission, but give permission, too. Permission to be sad, to be angry, to be sleepy or bored. To be something other than dying. To die.
Ask about privacy and confidentiality, favorite foods, how they want the room to be set up. Lights up, or down? Door open or closed? Music on or off? Agree on a signal for ending the visit. Know when to leave. Know when to be quiet.
You have to be honest with the dying person, but above all with yourself. There is nothing else worth doing here. Honesty is generosity, because when you are honest, you offer what you can truly give. Be honest about your own emotional state, without burdening the sick person. Resist your own impulses, your need for consolation, your wish for power, your urge for denial.
Know your limits. You have to grieve, and that means you have to go away sometimes. If you are hungry or need a rest, take care of yourself. If you’re anxious or worried, admit it. (Just don’t ask your friend to fix your feeling.) There’s a tricky balance between keeping your feelings in check and being authentic. You may try to downplay things, especially tears and anger, but you don’t have to hide them completely. On the other hand, you may be surprised by jealousy, irritation, and loneliness, and these are really yours to sort out elsewhere. Don’t say: Why didn’t you call me first? Why did you tell her before me?
Knowing these things is half the battle. The other half is watching and working with what happens.
A person who is ill may try to trigger your reactions. People may be testing whether you can handle talking about a difficult subject. Good listening goes a long way toward showing acceptance, and so does an open posture. Don’t stand over a person in bed or bustle around when they’re talking. Settle down, relax, keep your posture open, and try not to touch or soothe the difficulties away. You might feel a powerful urge to soothe painful feelings, to cover up. Don’t change the subject.
If there is a topic you absolutely cannot discuss, make that clear. Can you be still while a person cries? Don’t put a person in the difficult position of upsetting his caregiver. Don’t hide all your feelings under a bushel, but be a grown-up and manage your grown-up pain.
A person overwhelmed with illness may displace difficult feelings and shift attention away from the problem she is afraid to face. The big problem at hand. The ego is often about seven years old and prone to distractions when uncomfortable, like a kid who spills his milk just as you ask whether his chores are done. Adaptation takes many forms. Some people rationalize destructive behavior, ignore consequences. Some people will regress under stress, reverting to behaviors they used when they were much younger, refusing to take responsibility and looking for another person to act as the adult. There’s nothing inherently wrong with that; we all like someone else to be the adult sometimes. Just notice if it’s a pattern, and be careful. Watch the urge to become parental under stress, to take charge and try to manage the situation. Taking charge protects you from having to feel hopeless, but may not be what the person really needs.
Balance affect. If the person is hurried and talkative, you can speak slowly and listen. If they are withdrawn, you can start by doing the talking. If they are pacing, sit still. Notice incongruence. Is the person smiling while they tell a sad story? Are they clenching their fists while they say everything is fine? Dying tends to create incongruent feelings. You don’t have to challenge this. The person is working things out. Just be congruent in yourself. Don’t be afraid to cry a little sometimes; that’s congruent.
One way I might manage the hardest parts of being sick is to intellectualize my feelings. Perhaps I talk about the kind and brand of walker I want and ask you to check on prices. But I never say how it feels to need a walker (or a burial shroud). I may complain about how long it takes you to bring me lunch because I don’t want you to notice that I need help getting up from my chair. I don’t want to notice it, either. If I get angry at you for being late, I can briefly forget how it feels to need your help in the first place. Humans deflect when things hurt, and we are quick to project our struggles onto other people, using another as a kind of surrogate. I may talk about how Uncle Mario needs to use a walker now. I’m not just distracting you; I’m also testing you. I’m learning important information about how you feel about people who need walkers.
What not to say: Don’t talk like that. Let’s just talk about something happy. One of the most common ways we defend ourselves is by denial. We may simply deny what we’ve been told is true. Things not to say: My mother’s biopsy was negative. You look fine. Are you sure you’re sick? Denial is normal, but notice your own. A dying person may deny the truth for a long time. How often do we deny another’s denial? How often do we try to drag a person to the place where we think they should be, instead of meeting a person where he or she is? This is where open-ended responses help so much. Reflect on what you hear. Ask for more detail. Ask for what it means. Listen.
We can talk about good deaths and bad deaths, cheating death or embracing it, but the one thing that we all seem to reach for is this: when we die, we want to do it our way.
Tony Smith* says his mother and father were lucky, if such a word can be used for death.
For while they both experienced long-running, debilitating, and often traumatic health problems in the years before each of them died, when the time came, they died the way they wanted to.
Mr Smith’s father died suddenly in bed from a massive heart attack. His mother chose to be kept comfortable in her final days and hours, no heroic measures undertaken to prolong her life, no resuscitation to bring her back from the brink. She was surrounded by her family as she exited this world at age 78, which was, as Tony says, “on her terms”.
Asking someone how they want to die is awkwardly similar to the stock line from a Bond villain. But at a certain point in our lives, it is one of the most important questions for an individual to ask themselves, for a doctor to ask their patient, and for a family to ask their ailing loved one.
This question can make the difference between someone seeing out their final hours in a peaceful setting — at home, or in a hospice, or in a care facility — surrounded by loved ones, with the only medical interventions being ones to ease discomfort; or dying in a loud, busy, bright emergency department.
We want to die at home
According to one of many surveys with similar results, a South Australian study found 70 per cent of people said they would want to die at home if they had a terminal illness and 19 per cent said a hospital.
But data from the Australian Institute of Health and Welfare showed that in 2011 about 35 per cent of older people died in an emergency care setting and just 3 per cent died in community care.
Dying in a hospital setting is also expensive; it accounts for nearly half of the health costs associated with dying in this group. According to a 2014 report from The Grattan Institute, each year more than $2 billion is spent on older people dying in hospital.
“About a third of all people who die in hospital have only one admission — the one in which they die,” the report’s authors wrote. “The average cost of that admission for those aged 50 and over is about $19,000.”
It’s easy to forget we have a choice
While some of us may want the full suite of medical options in our final days and hours, some of us want to avoid it at all costs. The thing we often forget is that we do have a choice.
Liz Callaghan, the chief executive of Palliative Care Australia, points out that while we go through an often exhaustive process of preparing for birth — going to classes, talking to our family, making a birth plan — when it comes to death there is little planning and very little conversation.
“We’re ignoring those conversations, and by ignoring them we’re leaving family and loved ones with no plan and no idea what we want at a very emotional and difficult time,” Ms Callaghan says.
The analogy with birth is a useful one because many of the same questions need to be considered:
Where would you prefer to be when you die?
What sort of medical care would you like?
What sort of interventions do you want to avoid?
Who would you like to have with you?
But there is another very important question to be considered for those facing the end of their life, and one that is less likely to apply to a birthing situation: who should speak for you when you cannot?
Planning ahead
This is where advance care plans and enduring guardianships become vitally important.
These documents are intended to inform family, friends and medical professionals of your wishes about the sort of medical care and interventions you want at the end of your life, and to authorise certain individuals to speak on your behalf and ensure those wishes are respected.
Their form varies somewhat across states and territories, but one constant is that they are legally binding. A doctor aware of an advance care directive but who acts against its instructions could face charges of assault.
Advance care plans ask a specific series of questions intended to make us think about what interventions we would want and under what conditions.
These documents can and do evolve over time: what we might want when we are still reasonably independent and of sound mind may be very different from what we might want when illness has narrowed our options and the few choices remaining may be intensive and largely futile.
For example, the NSW advance care plan for individuals in residential care asks questions such as “If my heart or breathing stops due to old age or irreversible (not curable) health problems my choice, if CPR is a treatment option, would be to a) please try to restart my heart or breathing (Attempt CPR), b) Please allow me to die a natural death. Do not try to restart my heart or breathing (NO CPR), or c) I cannot answer this question. Let my doctor decide.”
It also asks individuals to think about how acceptable, difficult, or unbearable their life would be if, for example, they couldn’t recognise family or loved ones; have to be fed through a tube in their stomach; or cannot talk, read or write.
It provides space for individuals to write about their specific request with respect to medical care and in particular, life-prolonging treatments they do not want to have.
Mr Smith’s mother had had these conversations with her family, and was very clear about her wishes.
“Mum had strict DNR [do not resuscitate] instructions, she didn’t want any kind of life support, she didn’t want unnatural prolonging of her life,” he says. “Even when she stopped eating near the end she wasn’t force-fed or anything.”
Have the piece of paper and the conversation
But Ms Callaghan says the true benefit of advance care plans lies not in the pieces of paper but in the conversations associated with them.
“If you have those conversations and discussions with your next of kin, they will be confident that whatever they decide on your behalf is what you want,” she says.
It’s no coincidence that an online initiative to provide families with a framework for a discussion around end-of-life choices is called The Conversation Project.
As a GP of 30 years in the Western Australian town of Mandurah, Frank Jones has had that conversation many, many times with his patients. It’s not always comfortable, but he knows how important it is.
“People don’t like talking about their own mortality,” says Dr Jones, also president of the Royal Australian College of General Practitioners. “But I think it’s really important as people do age that we initiate this conversation.”
While we might be a death-defying society on the whole, Dr Jones finds that the vast majority of individuals who have life-limiting illnesses with little hope of meaningful recovery are very happy to have the conversation with their doctor, and happy to work through the one-page explainer he gives them.
The bigger hurdle comes when he suggests they also discuss it with their families.
As effective as an advance care directive might be in getting individuals to decide how they would prefer to die, it’s useless unless it is shared and at least acknowledged by that individual’s loved ones; the people who will be responsible for acting on those wishes.
Directives often missed in hospital panic
An advance care directive is also useless if the medical staff working with that individual don’t know about it.
Unfortunately, advance care directives are often missed in the panic and chaos that happens when someone with a chronic life-limiting illness is taken to hospital.
“In the middle of the night, if that elderly person has a fall, and is whisked off by ambulance to the hospital, the hospital has no idea, unless the family’s involved and unless they know there’s an advance health directive in place,” Dr Jones says.
Unless a person is actually carrying the advance directive with them when they go to hospital, or someone at that hospital knows their wishes, there’s every chance that health care professionals will do what they’re best at — try to save a life by any means possible.
This is why enduring guardianships are almost as important as advance care plans, because they identify the person or people who are legally authorised to speak on your behalf and communicate your wishes.
Those documents may need to be produced to establish that right in a situation where difficult decisions are being made, but they are an important part of ensuring that someone’s end-of-life choices are heard and acted on.
Better infrastructure needed to support end-of-life choices
The other challenge for our health system and society is setting up the infrastructure needed to fully support people’s end-of-life choices, particularly if that choice involves dying at home.
Dr Hal Swerissen, co-author of the ‘Dying Well‘ report from the Grattan Institute, says Australia needs a competent, home-based palliative care system that can support and take the pressure off carers.
“It is a challenge but there are now some really good home-based palliative care services, such as Silver Chain,” Dr Swerissen says.
“They take all the referrals for palliative care in Perth — so they do a lot of deaths each year — and they get 60 per cent of people [referred to them] dying at home.”
As well as enabling so many to see out their final weeks and months of life at home, services such as Silver Chain could also prove to be cost-neutral to the health system.
Dr Swerissen and co-author Stephen Duckett estimated that home-based care for the last three months of life would cost an average of $6,000 per person. If 30 per cent of all deaths were to occur at home, this would amount to an extra $237 million cost to the health care system.
But if these individuals are dying at home, they are avoiding hospital and residential care facilities, which Dr Swerissen and Dr Duckett calculated as a potential $233 million cost saving.
Mr Smith’s mother had hoped to die at home, but the level of medical care she needed at the end of her life meant she spent her final weeks in a palliative care facility. It wasn’t her first choice, but Mr Smith says the level of care she and the family received was excellent.
“We took turns, my siblings and I, to stay all night with her. As much as she wasn’t at home, we were there.”
A pregnant mother’s 20-week ultrasound often brings feelings of elation and anticipation as she learns the baby’s sex or sees the baby move in her belly.
But when that ultrasound shows a heart defect in her unborn child that will require multiple surgeries and could cause learning difficulties, necessitate a heart transplant, or even lead to an early death, everything changes for her and for her family. Expectations of the future start to change.
Children with complicated medical problems such as heart defects, severe seizure disorders or cancer need care from multiple specialists over their lifetime. As specialists in pediatric cardiology and pediatric intensive care medicine, we have seen too often that one key group — the palliative care team — is often not included.
One reason for this is that many people inaccurately think of palliative care as only care for the dying.
The National Consensus Project for Quality Palliative Care describes palliative care as an interdisciplinary approach to “patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering.” There is no mention of dying, death or end-of-life care.
Important legislation under consideration now seeks to expand opportunities for interdisciplinary education, training and research in palliative care. The Palliative Care and Hospice Education and Training Act recently passed the U.S. House of Representatives and is headed to the Senate. This legislation will support educational efforts that inform patients and health-care providers about the benefits of palliative care in supporting individuals with serious illness.
People with complicated medical problems and serious illness need medical specialists. Just as heart doctors treat heart problems and lung doctors treat lung problems, palliative care treats the suffering that results from serious illness.
Sometimes the reasons for suffering are obvious, as with a cancer patient’s excruciating bone pain or unending nausea. Palliative care providers use both medications and less conventional treatments, such as acupuncture or music therapy, to alleviate difficult-to-control symptoms.
Other times, suffering from serious illness can’t be seen easily. A new study published in BMJ (originally the British Medical Journal) found that 20 percent of patients with cancer have depression and 10 percent have anxiety. Often unnoticed or sometimes ignored, these complications can decrease survival.
To be sure, suffering comes in many forms – physical, emotional, spiritual. Many contend that physicians should focus on things such as physical bodily pain, and leave more existential suffering to chaplains or other religious figures. That is why palliative care requires an interdisciplinary team that includes social workers, chaplains, music and art therapists, nurses, physicians and others.
But palliative care providers can only help if they are invited to participate. Some physicians and parents may avoid introducing palliative care because they feel it is tantamount to “giving up hope.”
Yet, in some cases, palliative care may help extend life. In a study in China of adults with metastatic non–small-cell lung cancer, those who received early palliative care lived longer than those who received standard cancer care.
Such improved outcomes are not limited to the patients themselves. A new study published in Cardiology in the Young showed that mothers of children with a serious congenital heart defect (called hypoplastic left heart syndrome) who received early palliative care had less anxiety and improved family relationships compared to mothers who received regular care.
While some physicians may resist involving palliative care, many patients report they are open to the idea. A recent study of oncology patients published in the Journal of American Medical Association network showed, “very few patients or parents in this study expressed negative attitudes toward early palliative care.”
Of course, many patients with serious illness may not need palliative care. Some health-care providers might want to manage all aspects of their patients’ care. Certainly, all physician should have skills to treat difficult symptoms, address emotional challenges, and conduct difficult conversations. But as decision making and suffering become more and more complicated, involving clinicians with specific expertise can make a huge difference.
Unfortunately, access to quality palliative care services is lacking. One-third, or 802 U.S. hospitals with 50 or more beds, report no palliative care services. The Center to Advance Palliative Care gave one-third of states a grade of C or D based on inadequate access to palliative care.
To improve access to palliative care, more health-care providers need this training. According to the data from the National Palliative Care Registry, 1 to 1.8 million patients who could benefit from palliative care services, are not receiving it.
Just 140 existing palliative care training programs graduate only 360 physicians yearly. This is nowhere near enough providers to meet this massive unmet need. And one study published in Palliative Medicine shows that the need will double by 2040.
Fortunately, clinicians and families don’t need to participate in formal training programs to access palliative care education. The National Institutes of Health has a campaign to improve understanding for both patients and providers.
The American Academy of Hospice and Palliative Medicine website provides links to research, videos, training options, and more. The Center to AdvancePalliative Care provides tools, training, and technical assistance to build and sustain palliative care in all health care settings.
Palliative care must not be an afterthought, or a consideration after all other possibilities in care are exhausted. It is urgent that palliative care be accessible to everyone regardless of age at the onset of medical treatment. That way patients can be offered the best possible care and outcomes.
People who have been diagnosed with a terminal illness suffer a broad range of physical and emotional symptoms and other overwhelming struggles. Terminal illnesses are devastating diagnoses, and patients must learn to cope with the news that their disease cannot be cured.
When it comes to terminal illnesses, conventional medicine focuses on palliative treatment goals. This means doctors aim to make their patients feel as comfortable as possible in their last remaining weeks or months. Unfortunately, most of the drugs prescribed to terminally ill patients cause a host of unpleasant side effects, and some people flat out stop responding to conventional treatments. That’s where natural therapies come into play.
Medical cannabis is an excellent option as a complementary treatment solution alongside prescription opiates or other drugs for symptom management, but it can also be an effective alternate solution when patients suffer from side effects and no longer wish to take conventional medications.
Studies on medical cannabis and terminal illness have proven its effectiveness in treating specific symptoms that are often associated with end-of-life difficulties. Medical cannabis is a safe remedy for maintaining quality of life and providing comfort and relief for patients with terminal illnesses.
What Is a Terminal Illness?
Terminal illness is a broad term used to describe any kind of illness that is incurable or untreatable. Patients with a terminal illness have been told by their medical team that they have a certain remaining life expectancy and their disease will likely result in death. Illnesses like AIDS or cancer can be diagnosed as terminal illnesses when the disease is too advanced to be treated.
One of the primary issues surrounding a terminal illness is the psychological trauma associated with the diagnosis. Many patients fall into a deep depression and may even turn to substance abuse. Additionally, many of these patients have such advanced illnesses that they suffer from chronic pain, which only further amplifies their psychological symptoms.
Sadly, terminal illnesses affect far too many families. In 2006, the Pew Research Center reported that 42% of Americans know a friend or relative who is suffering or has suffered a terminal illness. Though this is a shocking statistic, but it’s made clearer when looking at the rates of terminal illnesses among Americans.
n the United States, cancer is the second leading cause of death. On average, more than 1,500 Americans die each day from cancer. HIV/AIDS is another potentially terminal illness taking far too many lives. In 2014, 6,721 Americans died from HIV or its complications, although the death rate associated with AIDS is steadily declining in the United States.
An under-recognized potentially terminal illness in the United States is kidney disease. According to the National Institutes of Health, advanced kidney failure kills more Americans than breast or prostate cancers. In 2013, 47,000 Americans died of kidney disease.
With these high rates of terminal illness in American society, it’s no wonder many of these patients are turning to medical cannabis as a natural end-of-life therapy.
Terminal Illness History and Outlook
The landscape of illnesses has changed drastically in the past 100 years. Thanks to greater global disease awareness and advanced medical technologies, people are living longer than ever. But illnesses themselves have evolved. A hundred years ago, it was common for people to die from infections and other acute conditions that could not be treated medically.
Today, in the industrialized world, it’s less common for people to die from infections. However, chronic illnesses attributed to our environment, lifestyles and the fact that people are living longer are the new medical challenge our society faces. Generally, our high-fat diets, sedentary lifestyles and increased exposure to synthetic products and chemicals have led to new types of terminal illnesses to combat. Cancer is a potentially fatal disease that is claiming lives at an astonishing rate.
In 2003, the World Health Organization, recognizing the global cancer epidemic, published a report estimating that by 2020, cancer death rates would increase by 50% to 15 million annually.
Thankfully, since those findings were published, medical technology has advanced, and many of these expected deaths are now preventable. There are still far too many cases where cancer results in terminal illness. This is why different therapy approaches, such as medical cannabis, can help address the cases where cancer becomes fatal.
Terminal Illness Causes
There are many different types of terminal illnesses all resulting from different causes and risk factors. Here are some of the terminal illnesses patients are diagnosed with as well as their causes:
Cancer: Cancer is a broad term used to describe several different diseases that can affect virtually every part of the body. There are many possible causes of cancer depending on where in the body it first develops. All cancers are characterized by the mutation of normal, healthy cells into abnormal, cancerous cells. By nature, cancer cells divide and spread quickly. As they spread, they form tumors — lumps of cancerous tissue. If left untreated, tumors will begin to shut down nearby organs, as the immune system can no longer fight against the attacking cells.
HIV/AIDS: HIV is acronym for the human immunodeficiency virus. It’s caused by a sexually or blood transmitted infection that attacks a person’s immune system. After years of being infected with HIV, a person’s immune system eventually becomes so weakened they develop AIDS — acute immunodeficiency syndrome — which is fatal.
Kidney Disease: Kidney disease is a serious, potentially terminal illness that damages a person’s kidneys. Damaged kidneys are unable to filter the blood properly, which causes waste and toxins to build up inside the body. Sadly, initial symptoms of kidney disease often go unnoticed until the condition becomes advanced. If kidney disease reaches the most advanced stage — kidney failure — the patient is no longer eligible for a kidney transplant or dialysis and the condition becomes fatal.
These conditions are some of the many well-known terminal illnesses that exist. Countless other diseases and conditions are considered terminal when patients stop responding to treatments or when the illness becomes too advanced to treat.
Terminal Illness Symptoms
While there are many different conditions that cause terminal illnesses, each having their own unique symptoms, most patients experience a similar set of symptoms during the end stages of life. These common symptoms include both physical and emotional or mental symptoms.
Here are the common symptoms experienced by people with terminal illness:
Physical Symptoms. When patients suffer advanced stages of diseases, there are common physical symptoms that occur. These symptoms include chronic pain and general weakness. Chronic pain affects more than 60% of cancer and AIDS patients. Other physical symptoms of terminal illness include:
Chronic weight loss
Anorexia
Loss of appetite
Fatigue and insomnia
Nausea
Vomiting
Constipation
Difficulty breathing
Emotional Symptoms: A terminal illness diagnosis is tragic and earth-shattering for patients and their families. Because of this, there is a range of different reactions among patients. Patients can experience emotions such as:
Anger
Fear
Shock
Denial
Blame
Depression
Helplessness
Many patients diagnosed with terminal illness go on to develop depression and anxiety. The Baylor University Medical Center found up to 77% of terminally ill patients suffer depression symptoms. Other reports indicate up to 20% of terminally ill patients are diagnosed with major depression — a serious and chronic grade of depression. In many cases, anxiety and delirium also accompany feelings of depression.
Conventional Terminal Illness Treatments
Treatments for terminal illness are focused on improving a patient’s comfort and quality of life in their remaining time. Terminal illnesses, however, are untreatable in the sense that they cannot be cured. Terminal illness treatments are referred to as palliative, meaning they reduce pain without an attempt to cure the disease.
Treatments focus on alleviating pain, improving strength and appetite and managing any symptoms of depression, anxiety and grief.
Here are the types of conventional treatments and care given to patients with terminal illness:
Opiates. Opiates are a class of drug that suppress the central nervous system and provide pain relief and a sense of euphoria. Morphine and hydromorphone are two of the most commonly prescribed opiates to relieve pain during end-of-life. Fentanyl, oxycodone and methadone are other opiates used to alleviate chronic pain for patients with terminal illness.
Anti-nausea medications. Nausea and vomiting are common terminal illness symptoms that can be managed effectively. Haloperidol is an anti-nausea medication that doctors prescribe to control these symptoms. Haloperidol can be taken orally or via injection.
Antidepressants. In many cases, doctors may prescribe terminally ill patients with antidepressants (SSRIs). Quite understandably, stress and depression arise with a patient’s knowledge of terminal illness. The physical and emotional suffering coupled with knowledge of impending death make some patients want to commit suicide, become overly stressed or too depressed to respond well to care-giving methods. Unless antidepressants are already part of the medical regimen, the patient may not respond to them in time to have any benefits before death.
Psychological/spiritual counseling. Doctors and experts advise patients to seek psychological or spiritual counseling to help cope with a terminal illness. Counseling helps patients better understand their condition, be better equipped to deal with it and address symptoms of depression and anxiety. Often, psychological and spiritual counseling for terminally ill patients will include the person’s family members.
Medical Cannabis for Terminal Illness
Unfortunately, many patients with terminal illnesses struggle with the types of palliative treatments they’re prescribed. Opiates and antidepressants both come with a host of side effects that can aggravate many of the end-stage struggles people experience. Medical cannabis is an alternative or complementary treatment option that many people with terminal illnesses have had success with.
The cannabis plant contains two organic compounds that provide medical benefits: tetrahydrocannabinol (THC) and cannabidiol (CBD). THC is the compound responsible for the psychoactive effect associated with cannabis. It’s also shown to possibly reduce pain, relieve nausea and boost appetite.
CDB is the other compound that doesn’t produce psychoactive effects. However, it does treat symptoms like pain, nausea, depression and anxiety, which are all associated with terminal illness.
Legal medical marijuana such as Marinol is approved by the FDA. In some states, smoked marijuana is also legal under state law but still illegal under federal law. Both forms of medical marijuana have been shown to help with pain. They are not pain relievers, but can work with opiates to make them more effective.
According to UCSF, they conducted a study using cannabinoids with opiates and found that patients showed up to 95% decrease in chronic pain when using inhaled marijuana vapor with opiates such as morphine. It also showed that the dosages of opiates could be decreased when opiates are used in conjunction with cannabinoids.
Medical Cannabis for Alleviating Symptoms
One of the strongest arguments for medical marijuana and terminal illness is for the treatment of nausea, vomiting and loss of appetite. Cancer patients that are undergoing chemotherapy have benefited greatly from the availability of FDA approved medical marijuana. It is known to reduce nausea and vomiting, often when more traditional medical treatments for the symptoms fail to produce significant results. Nausea and Vomiting can occur with several terminal illnesses such as cancer and AIDS – related illness.
Cancer and AIDS can also result in loss of appetite. It is expected at the very end of life that appetite decreases until it is nonexistent in many cases. However, it is often good for patients to eat as much as possible until it becomes impossible. Medical marijuana can help with that and is prescribed for just such occasions. In fact, the hunger-inducing effects of medical marijuana are so well known that they are even known colloquially as “the munchies” in the recreational marijuana use community.
Medical marijuana’s effects are felt soon after ingestion and virtually immediately after inhalation. There is no waiting period as there is for antidepressants. There is no guarantee that it will alleviate depression, stress and suicidal thoughts. However, it is useful for its fast-acting benefits. There is some research to suggest that medical marijuana can help some of the symptoms associated with depression, particularly difficulty sleeping, but it is still an under-researched area of medical care.
Best Cannabis Strains for Terminal Illness
Medical cannabis a versatile and natural therapy for people diagnosed with a terminal illness. The diverse health benefits of the cannabis plant address many of the common symptoms terminally ill patients face.
Northern Lights. Northern Lights is an Indica strain of medical cannabis. Northern Lights help with many of the major symptoms that terminally ill patients experience, including pain, depression, insomnia and loss of appetite.
Sour Diesel. Sour Diesel is a Sativa strain of medical marijuana for terminal illness. Sour Diesel is an excellent strain for managing terminal illness symptoms like pain, depression, fatigue and loss of appetite.
Sunset Sherbet. Sunset Sherbet is a hybrid strain of cannabis, meaning it’s crossed between the Sativa and Indica strains. Sunset Sherbet helps relieve terminal illness symptoms like nausea, pain, insomnia and depression.
There are countless different strains that can offer relief for terminal illness symptoms. Be sure to consult your local dispensary experts for more information on choosing the right strain for you.
Best Cannabis Uses for Terminal Illness
If you’re planning to use medicinal marijuana to treat your terminal illness symptoms, then it’s important to decide how you’ll consume it. You have a few different options. Here are some of the options for consuming medical cannabis for terminal illness:
Inhalation. Smoking marijuana, or inhaling it, is likely the most common method of use for medical cannabis. In addition to being easy and convenient, inhaling marijuana also provides fast-acting relief. For people suffering from chronic pain or depression, this is an important consideration.
Edibles. Another option for consuming medical cannabis for a terminal illness is to take it orally. This can be done through a cannabis-infused edible product such as chocolate. While taking cannabis orally delays the effects, it is a much longer-lasting effect than inhaling marijuana. Additionally, many patients prefer edible products over smoking because it doesn’t cause respiratory problems.
Drinkables. Drinkable cannabis products are another great innovation when it comes to methods of consuming medical marijuana. Drinkables are cannabis-infused drinks that are easy and convenient to use. Drinkables some in soda-like products, or you can brew cannabis tea. Like edibles, the effects from drinkable cannabis products tend to be stronger and longer-lasting.
Cannabis Side Effects and Precautions
Medical marijuana for terminal illness is generally very safe to use. There are limited side effects for most people who consume medicinal cannabis products. Some patients who are suffering major depression because of their terminal illness diagnosis may be concerned that marijuana products may heighten their depression symptoms. However, there is no research to suggest that prescribed medical marijuana can harm the terminally ill.
Additionally, marijuana does not interact negatively with other end-of-life treatments. No amount of it will result in fatal overdose. Further research is necessary to see if these trends in medical marijuana use hold true. However, its use for terminal illness is promising thus far.
If you’re planning to take medical cannabis for terminal illness symptoms, it’s important to follow the dosage instructions exactly as prescribed. For many people, the effects of marijuana make take a while to kick in. This is why it’s important to start with a small dose and gradually build from there.
Medical cannabis is a safe, alternative remedy for treating many of the terrible symptoms associated with terminal illness. If you or someone you love has been diagnosed with a terminal illness and would like to learn more about medical cannabis as an alternative treatment option, make an appointment with a local, qualified physician through MarijuanaDoctors.com today or sign up for our newsletter.
Lizzie Neville is an ‘end-of-life doula’ who helps people prepare for death.
Doula is a term traditionally associated with childbirth, describing someone who helps a woman before, during or after childbirth.
But ‘death doula’ Lizzie, from Alton, Hampshire, was hired by Lowri Rylance, from Basingstoke, when her husband was diagnosed with terminal brain cancer.
Sorry to be the bearer of bad news – sooner or later, we’ll all reach the end of our lives. Many of us are not keen to face this event, nor the time that comes directly before. It’s actually hard to say what is the bigger taboo, death or the personal care that most of us receive in our final days and weeks.
According to the Health Organisation, more than half of us die of an illness that requires some form of end of life care. Depending on your definitions, the figure can be much higher – a German study found it to be more like four out of five, which is in line with findings from my work in Scotland. Either way, care providers expect the absolute numbers of people in Western countries in need of end of life care to keep growing as populations continue to grow older in future.
As you might expect, older people have a higher chance of developing ailments that need care. The group of those experiencing a long period of dwindling physical and mental faculties due to frail old age or dementia is already rising: according to the death records that we examined in Scotland, for example, it doubled from 5.1% in 2001-02 to 9.7% in 2011-12, and dementia rates have continued to increase. The share of people undergoing shorter periods of decline, such as cancer patients, rose to 29.5% of all deaths in 2011-12. These numbers are slightly higher than many other countries, but roughly comparable.
Given these figures, you may wonder: what is life like at its end? Do people receive the care and support they need? The answer is, not everyone does. My colleague Iain Atherton and I mapped the last year of people’s lives in Scotland using a mixture of census data NHS data, and death records. Here’s what we found out.
Deprivation and being alone
We looked at all 53,517 people who died in Scotland within a year of the last census in 2011. About one in five were below pension age, half were aged 65-84, and just under a third were 85 or older. Every third person lived alone, and around 40% were widowed. Not the ideal situation when you need care.
The closer people were to dying, the more likely they were to have moved in with others. This varied by neighbourhood deprivation, however. In more deprived areas, 37% of people aged 70 and over – those most likely to need care – still lived alone, even in the last four weeks of their lives. In the least deprived areas, the rate was 25%. (In this age group as a whole, 18% of people died in a care home.)
To my knowledge, nobody has come up with directly comparable figures for other countries. From Eurostat data from 2014, though, we do know that 32% of over-65s in the EU live alone, for example, and that the UK is almost exactly in line with the average.
Let’s be honest: few people find the idea of living alone in old age appealing, no matter what their health status. In many cases, it goes hand-in-hand with depending on external services for care – strangers that invade the innermost sphere of your privacy. It’s probably one of the major reasons why people don’t like talking about this stage of life.
Consider new options
Yet if we want to make our last months and years of life less bleak, talking and acting is exactly what we need to do. As I have just discussed at a show at the Edinburgh Fringe on the subject, we should consider new options. We need to think outside the box, and ensure that we are the decision makers instead of being pushed back into the role of dependent.
Are retirement villages an option, for example? Or better still, housing complexes with people from different generations, where even a frail grandad can help the neighbour’s boy with his homework and still feel part of the community? Or can you band together with some friends, either in one house or in adjacent flats?
Bicep building.
In many cases, care decisions are made ad hoc, because an immediate solution is required. When your mother has had yet another fall and it’s clear she can no longer stay on her own and needs a care home bed in two days when she comes out of the hospital, there is no time to find the best home for her. You must take the place that is available.
Isn’t it funny that many of us tend to take out life insurance in case we die prematurely but don’t make provisions for the very likely possibility that we’ll need care? I doubt you look forward to your care home stay, the tightly scheduled visit of the district nurse, or the look on the face of your children when they need to decide whether they want to sell the house they grew up in to pay for better care for you.
Rich or poor, man or woman, the clock is ticking for all of us. Too many older people are facing the most vulnerable stage in their adult lives alone, and the next generation needs to find ways of avoiding this situation. It’s not to say that governments and healthcare providers shouldn’t take responsibility for care – they do anyway – but if we blindly rely on them to provide, there are limits to what we will receive. Before it’s too late, it’s better that we also come up with plans of our own.
