How Do You Know When Your Terminally Ill Loved One Transitions to Active Dying
Birth is to life as dying is to death. It’s hard work to be born and it’s even harder work for the soul to be re-leased in the dying process.
Dying is a holistic experience. It is a human experience, not a medical one. It can be a beautiful and spiritual experience. I wanted to share with you what to expect as your loved one continues to decline over time to transition to active dying, so that you can provide for that beautiful death.
How do you know when the end is near? Some people die unexpectedly while others decline slowly over time. Through close communication with a loved one’s health care team, it may be possible to obtain an estimated life expectancy. However, predicting how much time a patient has left is not an exact science, even if they have been diagnosed with a terminal illness.
Not knowing what to expect or how to handle new symptoms that arise as a person’s health fails only magnifies the stress and anxiety a family caregiver feels in an already taxing situation. Learning the signs that death is near will help you prepare for this inevitability and ensure that your loved one gets the care they need to manage end-of-life symptoms and remain comfortable. Do not be afraid to call in hospice, an organization of mercy angels. Most families wait too long to bring them in as end of life care partners. At this point, you may also want to hire an End of Life-Death doula who can also support you and your loved one in their role as soul midwife. Visit
http://nedalliance.org to find a doula in your community.
While most of the focus of end of life care is on the person who is dying, you and other members of your family will also need support. You will need to understand that certain things can happen and patient behaviors can change, as death approaches. Understanding the reason behind the changes and knowing how to handle them, can be extremely helpful as you sit vigil at your loved one’s bedside.
The end of life is very different for each person. It can be hard to predict because some people might have common symptoms weeks before they die, while others it’s only a few days before, and some might not have any of them.
At the end of life, your loved one may refuse food and fluids and complain of loss of appetite. S/he may intentionally refuse in order to hasten the death process. Loss of appetite can also result from depression or from a worsening of the disease process. Never force people to eat or drink. Allow choices. Hopefully, by now you have had end of life conversations with your loved one so you are familiar with what s/he desires at this stage. This is why it is so important for everyone to have a Living Will. It gives the dying patient a voice when s/he may not have one. If your loved one wants to eat or drink but is having a hard time swallowing, you can have the nurse check the person’s ability to swallow. Thicker fluids may be easier for the person to swallow than thinner ones. There are substances (such as Thick-it) that can be added to fluids to thicken them, making them easier to swallow. Speak to the person’s health care team about this. If the person is refusing or unable to take fluids, be sure to keep the person’s mouth and lips moist. End of life is not the time to be inserting feeding tubes. It is a time to let nature take its course.
Your loved one may exhibit confusion, agitation, and/or hallucinations, a condition referred to as terminal agitation, a heartbreaking end-of-life condition that leaves a patient drowning in inexorable anxiousness and confusion. S/he may withdraw, becoming less engaged in conversation, sleeping more, and not wanting to talk at all. These symptoms can be due to medications or to the body’s response to the dying process. Orient him or her to time and place, telling the day, the date and the year. Tell him or her the names of the people who are present at the bedside. If this upsets your loved one, do not continue with orienting them. Go with the flow of the person's conversation or mental state of being, taking the conversation wherever s/he does. If s/he gets upset, don’t validate the disorientation, as you don’t want to add to the person’s distress. If s/he is restless and agitated, restraint is not helpful. Talk quietly. Touch them. Kiss them. Stroke them. Hug or cradle them. Be calm and reassuring. Be present. Be mindful. Be there. Be intentional.
As one enters the transition phase, the physical body deteriorates while the spiritual body grows. Your loved one will enter an elevated spiritual realm. S/he may say that they see pre-deceased loved ones / angels who have now come to accompany them on their journey. Support your loved one in this. Letting your loved one know that you will be with them to the very end - that s/he will not be making this final journey alone - is one of the most comforting things you can say to the person who is dying. Other things that you can do is to keep the person company. Talk, watch movies, read or just be present. Encourage and allow the person to express his or her fears and concerns about dying. Reminisce with the person about his or her life. Bring in photos, scrap books, important family items. Include the person in discussions about relevant issues which gives a sense of control amidst a medical setting that might be totally out of control. Provide reassurance that all Advance Directives will be honored. Respect the person's need for privacy and dignity. And above all, be honest with the person who is dying. They want the truth. They deserve the truth. Share your own concerns, fears and sadness. When appropriate, tell the person that you really don’t know what to say or do, but you are there because you care.
Dr O’Brien, a surgeon for 30-plus years and then a retrained, board-certified palliative medicine physician for another 10 years, named this final phase of life “Precious Time.” He always said it with the emphasis on the first word, Precious Time. Precious Time is when death is likely, if not imminent. Precious Time is a type of time, the period of life that comes at the end. Not everyone has Precious Time; a sudden death does not allow for Precious Time. Knowing that a loved one is into Precious Time allows for saying what needs to be said and doing what needs to be done, such as: I love yous, apologies, and reconciliations. Precious Time allows you to keep to yourself and not say what you might later regret. In recognizing that we are into Precious Time, we can minimize or eliminate the subsequent I-thought-we-had-more-time regrets and focus on the love, the honor, and the bereavement rather than a vague or acute befuddled remorse because we just didn’t want to talk about end of life.
Pain management is crucial during these last days. All those facing imminent death fear a painful end of life. This is your last act of love for your loved one. To make sure their transition is as pain free as possible. Pain adversely affects almost every aspect of your loved one’s life. Since many people now choose to stay at home when death is near, it is important for you as a care-giving family member to learn how to safely administer narcotic pain medications while caring for your dying loved one at home. Most often, the drugs prescribed are Opioids. Morphine is commonly given to control pain and erratic breathing patterns. While you should follow the doctor’s orders carefully for the administration of such medications, you do not need to be afraid that your loved will become addicted to them. The drugs won’t kill your loved one. Your loved one is dying with or without the drugs. The drugs will help them die in a euphoric state. Their spirit will be released, free to soar with the angels.
When planning for comprehensive pain management, family caregivers can look to include alternative pain management techniques such as application of heat and cold, aromatherapy, massage, relaxation and breathing exercises, and the use of diversion such as music and movies. Bringing healing practitioners into the home who are licensed in massage, acupuncture, acupressure, hypnosis or other energy-field work, or who can provide transcutaneous electrical stimulation through the use of TENS units is also helpful. Hospice can be helpful in helping you obtain those therapies for your loved one.
When your loved one enters the active dying phase, time and space will disappear for them as they first becomes drowsy and gradually enter into a deep coma/ sleep state. Drowsiness can be due to the administration of narcotic pain medications that will also help to control erratic breathing patterns. Deep sleep/coma can also be due to the fact that as the disease takes over the body, there can be a lack of energy due to malnutrition, dehydration or organ failure. The dying person will ultimately withdraw from his external environment as it is physically and emotionally too hard to cope with. It is not uncommon for persons in the final stages of life to keep their eyes closed and to stop talking. Plan visits at times when your loved one is most alert.
Speak directly to him or her and talk as if they can hear. Always let them know when you arrive for a visit, when you leave the bedside for any reason and when you will return. Recall s/he may be aware and able to hear, but unable to respond. Do NOT shake the person who does not respond. Even if they are in a coma, they can still hear you. Be sure to keep quietly talking to your loved one. Telling him or her how much you love them How much their life has meant to you and others. That you and the family will be OK. That you will be there for them during the process. That you will miss them. Many patients hang on until they feel the family is ready to let them go. You must tell your loved one that is is OK for them to go.
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The actively dying person may experience a surge of energy which happens when someone who is spending lots of time sleeping suddenly wakes up and is articulate and clear and looking for food or drink. This is NOT a miracle. It is a phenomenon. It is a window of opportunity - a gift. Use the opportunity well to enjoy him or share those last thoughts. Give him whatever he wants.
As the body continues to shut down, s/he will become incontinent of urine and stool. Urine may be very dark. Be sure dignity and privacy is maintained when necessary to maintain your loved one’s hygiene.
Sometimes you might notice them staring off as though they see things we don’t, or they are looking right through you. Their eyes say a lot, so look for glazed or glossy eyes.
Sometimes there is body movement or sounds, sometimes it is quiet and peaceful. Neither can be predicted. The body is miraculous, it knows what to do, but it can be scary when you see/hear it for the first time.
Towards the end of the process, your loved one’s breathing will change. This can be very scary. Agonal breathing sounds like s/he is gasping for breath. They may stop breathing for short periods ( Apnea). The mouth may hang open. Toward the very end, your loved one may likely display Cheyne- Stoke breathing which is a gradual deepening of breaths followed by a short period of no breathing. These are all normal changes in breathing during this time. Make sure staff are turning & positioning your loved one and giving them medications as ordered. Morphine is used to slow down the respiratory rate and control pain. Oxygen and cool mist humidifiers provided by members of the health care team may make your loved one more comfortable. At this point, it is all about physical and spiritual comfort.
Unless there is a systemic infection, body temperature will start to drop as your loved one nears death. Feet and hands may become very cold. It’s OK to rub and massage them. Ask the staff for warm blankets if available.
You will hear gurgling of body fluids in the upper throat as your loved one loses the ability to swallow respiratory secretions. This will be accompanied by bubbling sounds with shallow breathing. S/he will not be aware of this and will not be uncomfortable with it. Be sure the staff is frequently turning from side to side while at a 45 degree angle.
Give your loved one permission to go. Give him or her the sacred space to go. Remove yourself from the bedside so they can go. Patients either wait for a loved one to come to their bedside or to leave their bedside before they die. Do not be upset if your loved one passes while you are not there. This is their last gift of love to you. By this time, you will have already said your goodbyes. Tell them it’s OK to go.
Help the soul release and be re-born. Maintain a safe, peaceful, holy and sacred space in your loved one’s room. Use gentle touch. Talk quietly with gentleness of voice. Hold his or her hand. Quietly sing, pray, hum , chant. Provide for low lighting, candles (if safe), soft nature/meditative music, pets, water falls, incense (if allowed), and whatever other sacred rituals you can access. If you haven’t already, consider bringing healing and integrative practitioners to the bedside who are proficient and licensed in massage, acupuncture, acupressure, hypnosis or other energy-field work. Soften and camouflage the cold, clinical hospital bed with flowers, flickering candlelight, photos of loved ones, and the faintest sounds of your loved one’s favorite
music. This all contributes to releasing and re-birthing the soul. It all provides for a humanistic and spiritual death experience… a beautiful death experience.
When death finally occurs, you do not need to rush to do anything but remain calm and intentional. The soul of your loved one is still present, perhaps even hovering around the body. Take your time to say goodbye and provide that opportunity to include other appropriate persons. You should note what time your loved one passed, but there’s no urgency to call either hospice or the funeral home.
You’ll know when that time is right.
You only have one opportunity for end of life to go well for both your loved one and yourself. You can do it!
Resources:
The National Cancer Institute has many articles about end-of-life concerns. Access them at http://www.cancer.gov/.
Caring Connections: National Hospice and Palliative Care Organization has more information about how to help patients and their loved ones. Access them at http://www.caringinfo.org/
To learn more about opioids and using them safely, go to http://www.painfoundation.org/ and search "Opioids Are a Treatment Option."
To learn about Green Funerals: http://www.greenburialcouncil.org
To learn about home funerals: http://thegooddeath.com
To learn about Voluntarily Stopping of Eating and Drinking: www.VSEDresources.com; Read Choosing to Die by Phyllis Shacter.
