Ten years ago, as the primary caregiver for my father, it was a privilege for me to be present when he reached the final stage of his life. One evening while I was out, he was rushed to the hospital. When I arrived, the doctor came and told me Dad was stable and I could see him. When I walked into the room, the same doctor looked at the machines my father was hooked to and realized he was dying that very moment.
“Your father must have been waiting for you,” he told me.
My dad passed away while I was sitting at his bedside, holding his hand and talking to him. The first thought that came to my mind was, “Now he knows the secret of dying.”
Maturing is a long, slow process, but in time we must learn to accept what we cannot change. Why do we make such a fuss about dying? Billions have done it before us!
Death is probably the only remaining adventure we face after leading fulfilled lives, but, of course, we don’t know how exactly we will experience this last chapter until we get there. However, a concept that has grown in popularity in recent years is that one’s quality of death matters just as much as one’s quality of life. This is an issue that should be discussed well in advance. Weighing the options for end-of-life care, understanding how the dying process works and talking about our preferences with our loved ones should be the norm to prevent unnecessary confusion, distress and discomfort for patients and families alike.
We should learn to live in the moment and feel the inner peace within us. When we suffer pain during our later years, we should admit the truth: “TMB” (too many birthdays). Hopefully, each of us will reach the stage where we can enjoy life like the calmness of an evening river, looking at the reflection of the grey and blue water, before the darkness of the night ends the day. It is my hope that sharing the following thoughts, experiences and realizations I have had regarding death and hospice care will help other families prepare for this inevitable transition.
Making End-of-Life Care Decisions
When a loved one becomes terminally ill, we need help. When we realize that their life expectancy is probably no longer than six months, what choices do we have? The person can stay at home as long as possible and move to a hospital or skilled nursing facility when it gets too difficult for the family to handle, or, with the support of their family and a palliative care team, he or she can remain in their own home until the end.
In some cities, there are hospice houses where a person can choose to live out their final days, weeks or months. Some hospice houses even allow their family caregiver to move in with them. The options of where to go should be discussed with the family members closest to the dying individual, but the final decision should be left up to them. If they are no longer competent to make this choice or able to express their preferences, look to legal documents such as a living will or prior conversations about their end-of-life wishes for guidance. What do they really want?
Whether in a hospice house or the comfort of their own home, quality of life for both the dying individual and their family caregiver(s) is enhanced under the care of hospice nurses and volunteers. Hospice nurses guide families through the last chapter of a loved one’s life. They help the dying person to be as comfortable and pain free as possible, which sometimes extends their life longer than expected.
In-Home Hospice Care: What to Expect
What is hospice care at home? For most people, it means dying with dignity. Medical equipment and supplies like a hospital bed can be provided, and the family caregiver can be instructed on how to handle end-of-life symptoms and administer pain medication. The caregiver and their loved one can enjoy their time together in a quiet, comfortable and familiar place. They can go out for a meal or a walk. They need not worry about end-of-life symptoms they don’t understand or doing the wrong thing, because there’s a 24/7 emergency hospice helpline they can always call when they need guidance or hands-on help. Multidisciplinary hospice staff come into the home regularly to ensure symptoms are well controlled, check that the care plan is being followed, assist with activities of daily living (ADLs), provide respite care, and offer emotional and spiritual support.
In the hospital, doctors abide by the Hippocratic Oath to use their expertise to help patients live as long as possible. With hospice care, the person who is ill (or their legal representative) is in charge of care decisions. If a patient feels it is pointless to continue curative treatment and would rather enjoy their remaining life without extraordinary measures, they can opt for palliative care instead. We occasionally read about people who miraculously outlive their estimated life expectancy with a terminal illness, but very few are so lucky. We hope this will be the case with our loved ones, but it is important to be realistic and prepare ourselves for the alternative.
Even with hospice care, physical and emotional discomfort are sometimes unavoidable. But each day can still be special—waking up in the morning with curiosity, hoping for a pain-free day and being grateful in the evening for the beauty of another unique day. Remaining active is the best therapy; being active means getting away from fear and misery. Hospice care at home supports these goals.
Navigating Difficult Emotions Surrounding Death
In my 20 years of being a hospice volunteer, I have learned how important it is for patients, caregivers and hospice staff to work together. A patient can choose to be unhappy and depressed or choose to be content and grateful for all the help and love caregivers and hospice nurses provide. But how can members of the care team be empathetic, cheerful and warmhearted if the patient is miserable and rude?
Everyone must work as a team, supporting one another through this transition that is both physically and emotionally challenging. Patients and their caregivers still have their past, remembering holidays and birthdays with family and friends and all the care and help they’ve given each other over the years. Life should not become meaningless at this stage and as if the patient no longer has a future. They can still hold hands with those they love and reflect on their lives together.
Perhaps family members are waiting for their ailing loved one to share their feelings, open their heart, and talk about their fears and hopes while they both are acutely aware of the constant passage of precious time. Sometimes families are able to enjoy this priceless gift together, but sometimes candid discussions, reminiscence and heartfelt goodbyes simply aren’t in the cards. At the end of the day, the only thing that matters is love.
As a caregiver for my father and a hospice volunteer for countless others nearing the end of life, I have asked myself: What does this person expect from me? What can I do while their bed is their world and they are too weak to handle their daily affairs? I also ask them, “Is there anything I can do to comfort you or is it better to be silent?”
It is a painful realization that only recently this person was active and full of energy and humor. Sometimes they made us angry, other times they made us laugh, but now you both cannot escape the reality that they won’t get better; this is the end. Each person handles death differently. Negative emotions like regret, guilt, fear, sadness, anger and resentment are bound to arise and may manifest as rudeness, outbursts, withdrawal or denial. Fortunately, hospice staff are skilled at navigating these very normal reactions to death and loss and helping patients and families work through them. Our job as caregivers is to reconcile what is best for our ill loved ones and ourselves during this trying time. In the end, they will be in a safe place when they stop breathing. We are the ones left to cope with the loss.
It can be helpful for a caregiver to write down experiences with their loved one over the years that shaped their relationship. The opportunity to share these memories may present itself, or they can be reread after their passing and serve as a source of comfort when the pain of the loss is unbearable.
A similar approach works well for dying individuals also—especially for those who have difficulty verbalizing their thoughts and emotions. In our local hospice house, we provide beautiful heart-shaped pillows that are comforting to hold and feature a pocket with just enough room for a little notebook and a pen. Whenever a patient wants to write something important for their family or friends to read, it is there right at their bedside.
Caregivers can encourage their loved ones to write down their thoughts about what is and was important in their lives, something beyond what one normally finds in the average obituary. It can be a pleasant surprise for a family to learn something new about a patient. Messages, reflections and ideas written in a person’s own words are invaluable to their surviving family members.
Passing the Time While a Loved One Is on Hospice
Hospice care is intended for terminally ill patients who have a life expectancy of six months or less. Knowing what to do with and for a dying loved one during this time can be somewhat daunting. Each patient and family member has their own physical and emotional abilities and preconceived notions of how this remaining time should be used. There is a great deal of pressure to make the most of it because each moment spent together could be the last.
Instead of focusing on quantity, hospice care enables patients and their family members to focus on the quality of this time. Hospice provides flexibility and understanding, allowing patients to engage in whatever meaningful activities they wish to fill their remaining days with. Some people are gravely ill toward the end and there isn’t much for their family to do but keep a vigil. Others who are more lucid and wakeful may be content quietly thinking alone or with family members, while still others might yearn for activities to do in the meantime instead of sitting idly by. It is important to follow the patient’s lead and offer realistic suggestions for things to fill the day, things to help them feel needed.
It can be very healthy to read a book aloud together. A good book is like a garden—it needs time to grow and develop, allowing the reader to fully relax and refresh themselves in it. Art is another wonderful tool to help everyone deal with their emotions. When neither the dying individual nor their caregiver wants to talk about their feelings because they are too painful, they can close pick up a brush or pencil and paint or draw. Sometimes their subconscious speaks to them through their art. And then, like the studio of an artist, the caregiver can make the room around their loved one’s bed a sacred place where imagination can gently run free, a place for their spirit to breathe.
Art and other creative outlets help us live in the present. My friend Josh, just 55 years old, lived his final weeks in a hospice house surrounded by his three beautiful daughters. Lots of laughter erupted while they were painting together. At the end, more than 50 paintings decorated his room. His last painting featured two different shades of blue—water and sky—and in the middle he painted a flying bird. He died shortly thereafter. Perhaps he wanted to tell us that he was finally free.
Voluntarily Stopping Eating and Drinking
In the final stage of life, we want to keep our loved ones around us as long as possible, so we make them eat. Most of us associate food and drinks with nurturing and love, but is encouraging eating and drinking at the end of life a good idea? Withholding food and water is a difficult decision that many family caregivers must face. If a loved one is still enjoying food, we are happy to feed them, but what about those dying individuals who want to stop or have lost interest in eating and drinking?
Most people nearing death no longer feel sensations like hunger or thirst. In this case, the patient’s wishes should always be respected. If they want to shorten their remaining time, voluntarily stopping eating and drinking (VSED) will probably accomplish that. Ideally, the dying individual is able to make this decision, but often their primary caregiver (usually their health care proxy or medical power of attorney) is in charge.
Spelling out preferences for end-of-life care using an advance directive, living will or physician orders for life-sustaining treatment (POLST) form is the best way to guarantee a person receives only the medical care they want and the type of death they want. These instructions also serve to simplify difficult health care decisions for their loved ones.
It is a common misconception that we die in agony and great pain without food and water. However, scientists have found higher levels of endorphins (morphine-like chemicals) in the brains of terminally ill patients who have stopped eating and drinking. As a result, there should be less pain and suffering, affording patients a good quality death. How much liquid a dying individual needs varies. The benefits of reduced or no fluid intake are less coughing, less throwing up, less mucous and less chance of water in the lungs. Hospice providers offer various products, such as specialized sprays, swabs and creams, in lieu of liquid to alleviate dryness of the mouth, lips and skin that occurs at the end of life.
There will be suffering and mourning for everyone who chooses to take care of a loved one. And yet every caregiver will experience a closure nobody can take away. The greatest gift caregivers can receive for all the work they do is the opportunity to say “goodbye” to the people they care for and love so much. This enduring closeness will remain with them forever.