Life is all a matter of perspective. We may look at someone and think they’ve got the perfect life and everything figured out, but we never know what that person is really going through. At the same time, we spend countless amounts of energy struggling and stressing over the small stuff in life, and unfortunately, it’s not usually until something traumatic happens that we realize this.
Recently, a young man in California was face to face with a life-threatening illness, and his prognosis did not look good. His cancer was diagnosed too late and doctors only gave him months to live. This is the sort of thing that will put your life into a harsh perspective, and the 24-year-old wanted to share his new outlook on life with those he would be leaving behind.
So, the young man began to write a letter and addressed it to anyone who would take the time to read it. In the letter, he wrote the things he wished he would have done, and some pieces of advice to those who would be willing to listen. Read the full letter below and take the dying man’s words to heart as you go about your life.
“I am only 24 years old, yet I have actually already chosen my last tie. It’s the one that I will wear on my funeral a few months from now. It may not match my suit, but I think it’s perfect for the occasion.
The cancer diagnosis came too late to give me at least a tenuous hope for a long life, but I realized that the most important thing about death is to ensure that you leave this world a little better than it was before you existed with your contributions. The way I’ve lived my life so far, my existence or more precisely the loss of it, will not matter because I have lived without doing anything impactful.
Before, there were so many things that occupied my mind. When I learned how much time I had left, however, it became clear which things are really important. So, I am writing to you for a selfish reason. I want to give meaning to my life by sharing with you what I have realized:
Don’t waste your time on work that you don’t enjoy. It is obvious that you cannot succeed in something that you don’t like. Patience, passion, and dedication come easily only when you love what you do.
It’s stupid to be afraid of others’ opinions. Fear weakens and paralyzes you. If you let it, it can grow worse and worse every day until there is nothing left of you, but a shell of yourself. Listen to your inner voice and go with it. Some people may call you crazy, but some may even think you’re a legend.
Take control of your life. Take full responsibility for the things that happen to you. Limit bad habits and try to lead a healthier life. Find a sport that makes you happy. Most of all, don’t procrastinate. Let your life be shaped by decisions you made, not by the ones you didn’t.
Appreciate the people around you. Your friends and relatives will always be an infinite source of strength and love. That is why you shouldn’t take them for granted.
It is difficult for me to fully express my feelings about the importance of these simple realizations, but I hope that you will listen to someone who has experienced how valuable time is.
I’m not upset because I understand that the last days of my life have become meaningful. I only regret that I will not be able to see a lot of cool stuff that should happen soon like the creation of AI, or Elon Musk’s next awesome project. I also hope that the war in Syria and Ukraine will end soon.
We care so much about the health and integrity of our body that until death, we don’t notice that the body is nothing more than a box – a parcel for delivering our personality, thoughts, beliefs and intentions to this world. If there is nothing in this box that can change the world, then it doesn’t matter if it disappears. I believe that we all have potential, but it also takes a lot of courage to realize it.
You can float through a life created by circumstances, missing day after day, hour after hour. Or, you can fight for what you believe in and write the great story of your life. I hope you will make the right choice.
Leave a mark in this world. Have a meaningful life, whatever definition it has for you. Go towards it. The place we are leaving is a beautiful playground, where everything is possible. Yet, we are not here forever. Our life is a short spark in this beautiful little planet that flies with incredible speed to the endless darkness of the unknown universe. So, enjoy your time here with passion. Make it interesting. Make it count!
When a patient is initially referred to hospice care, usually by their physician or a case worker within the hospital, they are usually given a list of hospice agencies in their area to choose from. Sometimes these referral sources have a particular agency that they prefer and their recommendations shouldn’t be taken lightly; they are in position to see how well a particular agency cares for their patients.
However, as with any health care decision, you should be as informed as possible in order to know that you are making the best decision for you and your loved ones.
Why Choosing the Right Provider Matters
All hospice agencies work within the guidelines set forth by Medicare. The basic services they provide are the same across the board. This may leave you wondering why it would even matter which hospice agency you choose. There are differences, however, and they’re often tucked away in the small details.
It’s important to do a little research from the start to find where those differences lie.
Your first interaction with a hospice agency may happen over the phone after they receive your referral information and call you to set up an appointment. It may happen in the hospital setting when a representative from the agency comes to evaluate your loved one and offer information.
It may be initiated by you. Regardless of how your initial interaction takes place, there are some important facts to gather from the start.
The 5 Things to Consider When Choosing a Hospice Provider
First, the location of the staff is important. More on that below.
Hospice care can take place in the home, in a nursing home or in a hospital. Very few hospices have inpatient facilities, which means that most people receive hospice care via an independent agency. So, probably the most important question you can ask a hospice facility is related to the location of their nurses.
Just to clarify, it really makes no difference where the agency’s office is located, but it makes a huge difference where the nurses are located. I used to work on-call for a large hospice agency that covered three counties, over 200 square miles. On weekends, I covered the entire area with only the help of one LVN (licensed vocational nurse). Consequently, I would sometimes be with a patient in one county and get a call from another patient who had a crisis in another county who then had to wait two hours or more until I was able to get there.
Knowing how far away the on-call nurses live from you and how large of an area the nurses cover is essential to knowing how responsive they will be to your urgent needs. Keep in mind that some hospice agencies have multiple branch offices that could be 50 miles or more apart from each other. Make sure that if the agency your looking at has multiple branch offices that they also have a separate on-call nurse covering each one, and that the on-call nurse covering your area also lives in your area. If you have a crisis in the middle of the night or on the weekend, the last thing you want to do is wait two or more hours for help.
The death of a loved one is always difficult. When the death results from a war or a disaster, it can be even more troubling given the sudden and potentially violent nature of the event. After the death of someone you love, you experience bereavement, which literally means, “to be deprived by death.” You may experience a wide range of emotions, including:
These feelings are common reactions to loss. Many people also report physical symptoms of acute grief – stomach pain, loss of appetite, intestinal upsets, sleep disturbances or loss of energy. Of all life’s stresses, mourning can seriously test your natural defense systems. Existing illnesses can worsen or new conditions may develop. Profound emotional reactions can include anxiety attacks, chronic fatigue, depression and thoughts of suicide.
Mourning is the natural process through which a person accepts a major loss. Mourning may include military or religious traditions honoring the dead, or gathering with friends and family to share your loss. Mourning is personal and can last months or years. Grieving is the outward expression of your loss. Your grief is likely to be expressed both physically and psychologically. For example, crying is a physical expression, while depression is a psychological expression.
Be aware that the death may necessitate major life adjustments, such as parenting alone, adjusting to single life or returning to work. These challenges may intensify any anxiety and grief you are already experiencing. Allow yourself to express these feelings.
Living with Grief
When a loved one dies, the best thing you can do is to allow yourself to grieve. There are many ways to cope effectively.
Seek out caring people. Find relatives and friends who understand your feelings. Tell them how you feel; it will help you to work through the grieving process. Join a support group with others who have experienced similar losses. Support groups exist at most military installations. If you feel overwhelmed, ask for help. It’s not a sign of weakness. Talk with a trusted relative, friend, family services staffer, minister or rabbi. Military chaplains can be helpful, as most receive training in pastoral counseling and crisis. Don’t let yourself become isolated.
Take care of your health. See your family physician. Eat properly, exercise and get plenty of rest. Be aware of the danger of using medication or alcohol to deal with your grief.
Be patient. It takes effort and time to absorb a major loss, accept your changed life, and begin to live again in the present and not dwell on the past.
Seek help. If your feelings become too much to bear, seek professional assistance to help work through your grief. It’s a sign of strength, not weakness, to seek help.
Helping Others Grieve
If someone you care about has lost a loved one, you can help him or her through the grieving process.
Listen. Encourage the person to talk about his or her feelings and to share memories of the deceased. Remember, it may take the person a long time to recover from the loss.
Don’t offer false comfort. It doesn’t help the grieving person to say, “It was for the best.” or “You’ll get over it in time.” Instead, offer a simple expression of sorrow and take time to listen.
Offer practical help. Baby-sitting, cooking and running errands are ways to help someone who is grieving.
Encourage professional help when needed. Don’t hesitate to recommend professional help when you feel someone is experiencing too much pain to cope alone.
Helping Children Grieve
Children grieve differently from adults. A parent’s death can be particularly difficult for small children, affecting their sense of security. Often, they are confused about the changes they see taking place, particularly if well-meaning adults try to protect them from the truth or from their surviving parent’s grief. Limited understanding and an inability to express feelings put very young children at a special risk. They may revert to earlier behaviors (such as bed-wetting), ask questions about the deceased that seem insensitive, invent games about dying or pretend that the death never happened.
Coping with a child’s grief puts added strain on a bereaved parent. However, angry outbursts or criticism only deepen a child’s anxiety and delays recovery. Instead, take extra time and talk honestly with children, in terms they can understand. Help them work through their feelings, and remember that they are looking to you for suitable behavior and coping skills.
Contact your local Mental Health America or the Mental Health America for information on mental health, mental illness, treatment options, and local treatment/support services. You can contact Mental Health America at 1-800-969-6642 (toll-free) or at its website, www.mentalhealthamerica.net.
Tragedy Assistance Program for Survivors, Inc. assists people who have lost family members in the Armed Forces. TAPS provides a survivor-peer support network, grief counseling referrals, and crisis information and can be reached at 1-800-959-TAPS (8277) or www.taps.org.
The Army Family Assistance Hotline is 1-800-833-6622, and the Army Reservist Hotline is 1-800-318-5298.
No. This is a choice made by patients who are already at the end of their life. A dying person will naturally lose interest in food and fluids and progressively become weaker. When the dying person decides to stop eating and drinking altogether, the process of progressive weakness leading to death occurs days to weeks sooner than would happen if the person were to continue eating and drinking.
Most people who choose to voluntarily stop eating and drinking do so to regain or maintain some control over their situation. Reasons people give for making this decision include the desire to avoid suffering, not to prolong the dying process and to take control over the circumstances surrounding their death.
What Kind of Patient Chooses to Stop Eating?
According to a study in the New England Journal of Medicine, which surveyedhospice nurses in Oregon who cared for patients who chose to voluntarily stop eating and drinking, the typical patient is elderly and considers himself to have poor quality of life.
Do Persons Who Choose to Stop Eating Suffer?
Overwhelming evidence says no. The same study in the New England Journal of Medicine found that 94 percent of nurses reported these patients’ deaths as peaceful.
The cessation of eating and drinking is a normal part of the dying process that typically occurs days to weeks before death. Once the body becomes mildly dehydrated, the brain releases endorphins which act as natural opioids, leading to euphoria and often decreased pain and discomfort. When a dying person voluntarily stops eating and drinking, the same process occurs, and they may report feeling better than when taking in nutrition.
Very few patients complain of feeling hungry or thirsty after the first couple of days. Mucous membranes may become dry as dehydration sets in, which is why some patients may want to moisten their mouth with drops of water for comfort.
When death by voluntarily stopping of eating and drinking was compared with death resulting from physician-assisted suicide, nurses reported that patients in the former group had less suffering and less pain, and were more at peace than those in the latter group. Nurses reported that both groups had a high quality of death, which sounds strange but means that their deaths proceeded with lower levels of pain and struggle.
How Long after Does Death Occur?
Once a person stops eating and drinking, death usually occurs within two weeks. The person may continue to take small amounts of water to swallow pills or moisten the mouth, and these small sips of fluids may prolong the dying process by a couple of days.
Is Voluntarily Stopping of Eating and Drinking Right for Me?
This is likely a question you never thought you’d ask. But if you are, be sure to discuss this with your physician. She will likely want to make sure that there aren’t treatable conditions, such as depression or untreated pain, that are contributing to your decision. She may also refer you to a social worker or a member of your religious organization (if applicable) to discuss this decision further.
No one can tell you whether you should voluntarily stop eating and drinking. Depending on your quality of life, amount of suffering and personal belief system, you can decide if this choice is right for you.
In the article she mentions that musician Ben Lee is also a death doula.
In case you’re not familiar with the term, a “doula” is traditionally someone who gives support to a woman during pregnancy and during and after the birth.
A death doula is someone who helps at the other end.
Here, Jaki Fisher, an Australian living in Singapore and studying to be a death doula, writes about her first experience witnessing death.
JENNY was the first person who asked me to be with her when she died.
A single woman in her early 50s with only a couple of nephews she was in touch with, Jenny was being cared for at the Assisi hospice in Singapore where I was a volunteer.
Jenny and I talked a lot about what might happen during the dying process and afterwards and it was then that she told me she wanted me to be with her as she died. I said I would do my very best to make this happen.
After several months, Jenny suddenly got quite a lot weaker but at the same time, something in her shifted. I noticed this and asked her if she felt different and she replied that she felt that she was coming to accept what was happening.
She was hardly eating but I remember that when she would have a sip of coffee, her eyes would light up at the taste and she would savour it with delight. And when she went into the garden, she would marvel at the sun and the wind — simple, present joys became very strong for her.
At the end, Jenny deteriorated rapidly. Her breathing changed and it was clear to the nursing staff that she would not live much longer.
With most NODA programs in hospitals, volunteers are called to sit with dying people who are alone, estranged from their families or far away from loved ones when they are actively dying.
At Assisi, from the time an alone person is admitted to the hospital, the NODA volunteers become the family and visit them until they were actively dying and then sit in vigil during the last couple of days of their life — if that’s what they wanted.
I started the vigil and took the first shift, setting up Jenny’s room with music and soft lights. Jenny was not conscious but I believe she knew I was there. I spoke to her and told her I was there to be with her as she had requested. I remember feeling nervous as I went into the room and initially I felt like I had to ‘do’ things, like read poems or inspiring verses.
Gradually, I took some time to ground and centre myself and create an atmosphere of awareness and presence, as we had learnt in our training. Then, I just focused on really being with Jenny, with no distractions.
I was aware that this was not a normal time, that something big was happening. Jenny had had a fever and when I first sat with her, she was moaning a little. This was unsettling but it also seemed quite normal — I was struck by how OK everything was, even though it was also very sad. In some weird way, as humans, we know how to do this end of life thing. Her breathing became very shallow and there were long pauses between each breath. I remember at one point, I thought that perhaps she had breathed her last breath when suddenly she took a big inhale and I jumped in fright. I sort of laughed to myself and thought that Jenny was again teaching me, reminding me that this was not about me, it was about Jenny and I just tried to relax and be with whatever was happening.
She passed away after only 90 minutes, very gently and softly while I was singing quietly to her. I couldn’t help but think that as usual, she didn’t want there to be a fuss.
We had promised her that she would not be alone when she died, and I was so grateful that we could fulfil that promise.
Being with someone when they die is powerful but it is not frightening. Many people make this comparison, but dying is a bit like labouring to give birth. There are urgent bits and struggling bits and then at the end, it all goes quiet. When Jenny actually died, I hardly even realised, it was so soft, a tender sigh.
After Jenny’s death, her nephew told me that her life had been quite hard and often lonely but that she had shared with him that she was amazed that in her last months of life, when things were really difficult, there was so much love and care in her life.
In the past two years, the NODA team at Assisi has accompanied more than 10 people during the last months of their lives and sat with them during their final hours. Many of the people we have accompanied lived hard, isolated, rough lives and I wish they could have been otherwise, but at least at the end part, they were loved with no expectations.
My dream is that people all over the world will adopt the NODA program in their own way so that we can all start to look after each other, especially at the end of life.
Nowadays, the profession of death doula is garnering a lot of interest. So am I a death doula? I am certainly interested in this area and I am heading off to San Francisco soon to take part in a death doula training and receive certification.
But I have my reservations about this sudden interest and the cynical part of me wonders if it is just the latest trendy thing, like being a yoga teacher was.
However, another part of me celebrates that perhaps this interest might be indicative of people wanting to face their mortality head on. I also like that death doulas are there to help people reclaim death as a natural part of life.
In the past, most people died at home — it was just another of the momentous life events — but in the past 50 years, we’ve pushed it away out of sight.
One thing I do want to say is that it is sometimes easy to romanticise dying but it’s not romantic — death is messy, draining, demanding, challenging, funny, heartbreaking, boring — everything … Death is often also really sad and a big loss, so I don’t really feel comfortable about making it a big celebration, unless of course it is!
I’m also wary of the idea of having a “good death” — that kind of creates a weird sort of pressure — like the one that is given to mums when they are striving to have a natural birth at all costs — our death will be what it will be.
However, what I do think is great is that people are talking about end of life and their choices. This conversation is so crucial and helpful and will make the end of life much clearer at a time when things are so rarely clear. However, once again, I wonder about being too attached to a plan — I think death would chuckle wryly at that idea.
To me, being with someone at the time of death is to become intimately exposed to not knowing — it asks us to be fully present and fully OK with whatever happens and not to impose a preconceived idea of what it should be like. To me, accompanying someone at the time of death is not really about doing anything, it’s about being able to hold and be there for whatever. We like to control everything in our lives but death does its own thing … it’s still the biggest mystery in our lives.
‘AN UNNATURAL INTEREST IN DEATH’
I first volunteered at the Assisi Hospice not because of any great altruistic yearning to serve but because I knew that the people there had the inside story about dying. And I had an unnatural interest in death.
I fell into a black swirl of depression at 27 after I tried to fix my face. I went for some kind of noxious peel, a treatment that’s now probably banned. It’s kind of embarrassing — other people get depressed because they lose a loved one or suffer a terrible trauma — me, I thought I’d wrecked my face and down I went into the dark pit. (It’s fine now. Not quite the same but a perfectly serviceable face.)
I was lucky and got treatment and part of the therapy was to do something for others, to forget about “me” for a while. After much sulking and prevaricating I finally started volunteering at the Assisi Hospice.
I still remember the first time I went into the wards and saw my first “dying person” — how tiny and fragile, limbs like little birds, and yet how bright the eyes were.
I didn’t really speak Mandarin, Malay or Tamil (three of Singapore’s four official languages) and most of them didn’t speak English — the 4th one. And yet, those people didn’t just teach me about death, they taught me about life and living.
They taught me about bravery, love, tenacity, dignity and they didn’t seem to mind that I was a self-absorbed, self-destructive girl. They didn’t judge me and they let me see them in all their vulnerability and in this strange suspended time of life. Yes, they were dying but they were also very much alive.
I was supposed to be the do-gooder but they were the ones who taught me and showed me that life is all about moments and all about connection and all about love — and that’s about it.
I moved to the US to study Buddhism and then back to Melbourne but I never forgot the Assisi hospice. In 2012 after reading Being with Dying, a book about accompanying people at the end of life by Roshi Joan Halifax, I attended her Buddhist Chaplaincy program in Santa Fe.
Two years on, I was a Buddhist chaplain and also completed a unit of Clinical Pastoral Education at the Royal Melbourne Hospital.
But I was still volunteering at Assisi and as part of my chaplaincy project helped set up the NODA program.
Jenny spoke openly of her anger and frustration. She had accepted that she did not have long to live but she could not accept that she had to wait so long to die. This was another lesson for us. It was hard not to want to ‘fix’ this and make it better for her. At one time, she wondered what the point of her life was and expressed sadness that there were so many things she hadn’t done. I told her that from my point of view, she was teaching us so much and that she would live on so powerfully for us as our first NODA patient.
I asked her if we could talk about her after she had gone and whether we should change her
name if we did so. She was adamant — if it would help others gain a deeper understanding
about death, then we could certainly go ahead and use her full name with no changes.
We have been running this program for two years now and all of us involved can feel how it has the potential to touch us all and offer something that is greatly needed in
today’s highly medicalised and hurried world — genuine human companionship at the end of
life, especially for those who have no one to give it to them.
Jenny’s life was certainly not in vain. She lives on in the program and touches
every patient we serve. Because of her willingness to embrace NODA, more and more
people have not died alone — this is Jenny’s precious legacy.
The LifeCourse program educates patients on how to write a medical directive, how to care for themselves, and even how to make the best of their remaining time — and has achieved striking results in the way people use medical care in their final months.
Bob DeMarce made a living as a funeral director, but he didn’t think much about his own mortality until he developed cancer. He soon learned it took more than being sick to prepare him for death.
DeMarce became one of hundreds of Minnesotans enrolled in a research program that prepares patients and families for the end of life. Conducted by Allina Health, the LifeCourse program educates patients on how to write a medical directive, how to care for themselves, and even how to make the best of their remaining time — and has achieved striking results in the way people use medical care in their final months.
DeMarce already had plenty of doctors, care coordinators and rehab specialists to attend to his medical needs. LifeCourse gave him a “care guide” — a nonmedical counselor — who met with him and his family to help them set goals and provide support.
“Most people would hesitate to talk about this sort of thing,” said the 75-year-old DeMarce, who has had two bouts of lung cancer in addition to colon cancer. “With the different scares I had with cancer … We did want to get things straightened out.”
One goal of the program is to increase the number of patients with advance care directives, which research has shown can reduce the amount of unnecessary and often unwanted care at the end of life.
And the results were dramatic: Patients in the LifeCourse intervention group had fewer hospital inpatient days, fewer emergency room visits and less intensive care, compared with a control group that was tracked but did not work with care guides. About 85 percent completed a living will, compared with 30 percent in the control group.
But the program also aims to improve the quality of life at a time when chronically ill patients and their families often feel overwhelmed.
“The model we chose was one that would be very personal,” said Dr. Eric Anderson, a palliative care physician at Allina’s United Hospital and one of the LifeCourse leaders. “There is an intimate connection between talking about what matters most and having effective advanced directives.”
In some ways, the program turns the patient’s focus away from the end of life to the life that can be lived.
“People want to have meaning in their lives, that is more important than anything else,” said Anderson.
“The lived experience for these patients and for their families is simply better. In a number of ways they feel more holistically supported, less anxious and they are using services in a more rational and effective way.”
Minneapolis-based Allina is so encouraged by the program that it plans to develop it beyond the research phase and make it available to patients at eight Allina clinics by the end of this year. It is also talking with other organizations that might adopt the LifeCourse model.
“We’ve got such a large number of people who will be over the age of 65 who will face serious illness,” said Heather Britt, Allina’s director of applied research, who also worked on the project. “Systems like ours have to figure out what to do differently.”
Setting a course
LifeCourse began in 2012, targeting patients with heart failure, advanced cancers and dementia using Allina’s electronic medical record.
“We figured out who was sick enough with those diagnoses, and that took a fair amount of tweaking,” Anderson said.
Eventually, 450 patients were enrolled in the intervention group and about an equal number in a control group.
Care guides meet with patients and their families monthly.
“I am helping them identify what their goals would be and what resources that they might need,” said Judi Blomberg, an Allina care guide since 2013. A lawyer by training, Blomberg was drawn to a health care job because she wanted to help people dealing with crises and trauma.
“Feeling overwhelmed is something that happens when we hit those crisis points,” said Blomberg. “One of my jobs is to help people anticipate what is to come.”
Using a set of questionnaires and assessment tools, care guides help patients set a course to achieve what matters to them.
For some patients, it could be medical goals such as staying out of the nursing home, controlling blood sugar, walking without a cane or losing weight. But many patients also set goals outside the medical realm: doing volunteer work, spending more time with relatives or putting together photo albums.
Toes in the ocean
Bob DeMarce and his wife, Marilyn, who were among Blomberg’s first clients, decided their initial goal was to develop a living will.
“One thing that we were bringing to them was a framework where they can talk about difficult things together that had been hard for them to talk with each other about,” Blomberg said.
“It felt very natural,” said Marilyn DeMarce. “They made it not hard to sit down and have a conversation.”
“She kept us on point and made sure we got it done,” said Bob DeMarce, who does not want any extraordinary measures to prolong his life.
In addition to completing a living will, the DeMarces resumed traveling, a favorite pastime, last November with a trip to Palm Springs, Calif., including a side trip so Bob could stand in the ocean.
“That was big on my bucket list,” he said.
Although Bob DeMarce is now cancer-free, he did fall and break his femur about two years ago. The DeMarces were able to rely on their care guide for help.
“It really provides extra support. When you are in crisis you need as much help as you can [get],” said Marilyn DeMarce. “When you are living with this type of illness you know that at any moment your life could just change.”
“The interest they have shown in my health for whatever reason has been beneficial to me,” Bob DeMarce said. “It prepares you to live with being sick but it also helps you to get ready to die.”