The terminally ill patient can be served by hospice in a variety of settings with contributing factors which influence the experience of dying and thus, the experience for the family. The hospice team is available wherever the patient lives, allowing the family to reach out and request help. For patients living in a nursing facility or hospice house, their families have the benefit of a professional’s presence at a moment’s notice but may lack the emotional safety of home. Many patients choose to die where they have lived with the family embracing the role of caregiver, witness, and consoler. The setting, the cause of the illness, the composition of the family, and the hospice company may vary but there are similarities in the signs and symptoms of approaching death—the knowledge of which will increase the confidence and comfort of patient and family.
The reality of losing a loved one to death is heartbreaking but with emotional preparation, it can also become a meaningful and awe inspiring experience. The more one knows about the physical process of dying, the greater the understanding of what the body does and does not need. Family need not be accepting of the impending death to provide extraordinary care to their loved one. Moods are expected to fluctuate, tears will flow, and exhaustion may set in. At times, it will be necessary to lean on hospice for education, clarification, suggestions, or encouragement. With the support of the hospice team, the family should not feel alone. This article will share the most common phases of the dying process, symptoms to observe, and indicators when hospice should be called.
Comfort medications can be useful during end of life for anxiety, pain, confusion, or shortness of breath. The hospice nurse will assess and guide the patient and family toward the medicines which will best relieve the presenting symptoms. Complimentary Therapies including massage, music, and Reiki may also be recommended and available through the hospice organization. Families are often reluctant to use end of life medications, often viewing them as expediting the dying process or inducing sleep and making the patient too tired to spend time with them. While these feelings are natural and understandable, comfort medications can enhance the time the patient has left and improve the ability to interact and engage with family.
Months to Weeks Before Death
Food: What the Patient Wants and Needs
Appetite will wax and wane, eventually slowing until the patient desires only comfort food. For some it will be sweets; for others tea and toast, or perhaps pasta. The patient needs permission to choose what and when to eat and to feel respected for the choices made. The patient can be trusted to know what his or her body needs and can tolerate. Rather than eating solid foods, the patient may ask for fluids such as a favorite drink, or something unexpected and not commonly consumed.
“As the end of life nears, the body gradually loses its ability to digest and process foods and liquids. As organs and bodily functions shut down, minimal amounts of nutrition or hydration/liquids might be needed, if at all.”Vitas Healthcare
How soon the appetite will change will depend on the disease process, pain, anxiety, sleep, breathing issues, and the patient’s emotional state.
Food: What the Family Wants and Needs
In their efforts to support the patient’s strength and health, the family may encourage eating and when their fear takes over, they may push food multiple times per day. The family may ask or persuade the loved one to eat at the table with them to preserve family tradition or culture. It may be uncomfortable for the patient to sit in the presence of food with people in a completely different phase of life. Eating equates with living and the patient is gradually preparing to die.
Mr. P. was an Italian gentleman providing end of life care at home for his wife of 58 years. The hospice nurse visited one day, and his wife shared that she was eating to protect his feelings but the food was making her ill. The nurse provided education and support and thought that the issue was resolved. When the social worker made a home visit as the wife was nearing an unresponsive state, Mr. P was spooning Pastene into her mouth. He cried with the social worker, sharing that he could not let go and was convinced that the pasta would keep her alive. When the social worker reinforced the teaching of the nurse—that being forced to eat can cause harm including choking, aspiration, and discomfort—Mr. P finally relented.
Food: How the Family Can Partner With the Patient
The most important way to show love and respect is to ask the patient what they want and need, and then provide it. For example, while the loved one is still attempting to eat, serving food on a small plate or saucer may help to make the food more appealing and enjoyable. Multiple small snacks throughout the day may be more manageable than 2 or 3 large meals. Being presented with a full plate of food may cause nausea, provoke feelings of guilt over waste, and create fear of disappointing the caregiver. Some medications must be taken with food, so the patient and caregiver can be creative in discovering what will work best. Applesauce or pudding will typically suffice. If the caregiver approaches the food issue without guilt or shame, the patient is free to explore favorite foods or those that were emotionally forbidden earlier in life.
Carmen was dying, being cared for by her loving family. Her best friend surprised her by having a cheesecake delivered, a passion in which Carmen would rarely indulge. One bite at a time, day by day as her appetite diminished, Carmen was able to savor that cheesecake and bless her friend’s understanding of what she needed most.
Food: When to Seek Help
A time may come when the ability to physically tolerate food is compromised as evidenced by increased coughing upon eating or drinking, spitting up, or holding the food in the mouth without swallowing. The danger at this stage is aspiration pneumonia (unintentionally inhaling food or fluids into the lungs). It is possible to choke to death when food blocks the airway, an unimaginable and traumatic way to die. Sudden changes in eating or drinking is a time to reach out to the hospice team.
Caregivers and patients alike may assume that reduced appetite and intake would prevent bowel movements. The body continues to make stool and if the patient has not moved bowels in 3 days, the hospice nurse should be notified. Constipation can quickly turn into an unnecessary issue creating pain and discomfort. If the patient or caregiver notices frank blood in stool, urine, mucous or vomit, or has diarrhea which will not subside, hospice should be contacted.
Sleep: What the Patient Wants and Needs
During these months and weeks, the patient may want and need to sleep more often. For some, rest time is a period of reflection and the beginning of emotional distancing from loved ones. A patient may be feeling sad or discouraged and use sleep as a respite from the hard work of preparing to let go. Reduced caloric intake can cause a decrease in energy and the difficult work of slowing down internally can be exhausting. Disease processes such as cancer, and the side effects of cancer treatment may affect normal sleep patterns. The American Cancer Society states that, “Cancer-related fatigue is often defined as an unusual and ongoing sense of extreme tiredness that doesn’t get better with rest. Almost everyone with advanced cancer has this symptom.” After a long, difficult battle against a disease process like cancer, dementia, MS, or ALS, the decision to stop treatment can feel like a victory and sleep may be welcomed.
People at the end of life may also find that sleeping is impossible, frightening, and stealing time from the life that is remaining. Extra help may be needed in the form of medication, relaxation exercises, environmental adjustments, and counseling to process feelings. As death nears, sleep is necessary to stabilize mood and face the emotional work ahead.
Sleep: What the Family Wants and Needs
For the family, any change in the normal routine can be interpreted as a sign that death is approaching. Family members wish for more time with the patient, including the time that is spent sleeping. Jealousy over sleep, feelings of rejection, and worry that the patient is sleeping when he or she should be eating can disrupt the caregiver’s peace of mind and create indecision and self-doubt. It is normal, albeit exhausting, to check on the patient multiple times during naps or throughout the night to observe breathing.
The patient that is unable or unwilling to sleep can ease the anxiety of the family until the family is also not sleeping.
“Not getting enough good quality sleep can make physical symptoms and difficult emotions harder to manage.”Marie Curie
Agitation, confusion, emotional flooding and impulsivity can create safety issues and chaos can ensue. Everyone must sleep by taking turns, hiring private caregivers, or seeking an alternative setting as death nears.
Sleep: How the Family can Partner With the Patient
Caregivers’ feelings may fluctuate daily or hourly, similarly to those of the patient. For the family, naptime can be a time of rest and reflection, a break used to regroup or seek support. When the patient is sleeping, the family can prepare for the funeral or celebration of life event. The family may have a healthy meal or take a walk if the patient’s safety is not a concern. The patient may be gently awakened for a snack or drink. Allow the patient’s needs to guide decisions and trust that his or her body knows what is best in that moment. The patient will benefit from observing that the family is coping well and handling the day-to-day issues as calmly as possible. Family drama can easily disrupt the letting go process.
Days to Hours Before Death
The circumstances in the days and hours prior to death will vary but it is likely that the patient may no longer need, wish, or be capable of eating. Swallowing fluids may be replaced with mouth swabs, rubbing ice chips on the lips, or by moistening a face cloth and wiping the teeth and tongue. Body temperature may change due to dehydration, but thermometers are seldom used at this stage of the dying process. Comfort measures—such as cooling the area or placing lukewarm cloths under the armpits and on the forehead—may ease concern. The medication kit provided by the hospice should be viewed as a toolkit to address the symptoms observed by the family. Decades of use have proven that these medications, with proper education of the caregivers, can address each sign of impending death to smooth the transition and guard against discomfort.
“The most basic of hospice comfort kits contain medication for pain, anxiety, nausea, insomnia, and breathing problems. Your hospice nurse should explain each medication to you, including the purpose and correct way to administer it.”Verywell Health
Should the family become confused or their efforts to achieve comfort fail, help from hospice is available 24 hours a day. Family members may express anxiety regarding the administration of the medication. A reminder that a doctor’s orders are in place may help to reduce or eliminate fears.
Restlessness and agitation are symptoms which produce worry in caregivers and discomfort for the patient. Picking at clothing, bedsheets, limbs, or items in the air which others cannot see are signs of agitation. Causes of terminal restlessness are varied. If pain has been addressed, the patient is clean, the bedsheets are tidy, and the room is calm and peaceful, then the internal process of shutting down may be the reason.
“As the liver and kidneys start to fail, metabolic alterations and electrolyte problems impact brain function. In a similar way, heart and lung failure can result in decreased oxygen levels, exacerbating terminal restlessness.”Pathways Health
This phenomenon can be managed with medication, soothing voices, music or quiet, and soft lighting.
In time, the patient should become rather still with little to no movements of the limbs and with breathing the only sound to be heard. The patient will likely have his or her mouth opened, eyes closed, and potentially, the family may hear the sound of congestion caused by altered fluid management during the dying process. If the family is unsure of how to use the medication for congestion in the comfort kit, then the hospice can offer guidance. Congestion is often more uncomfortable to the listener than to the patient.
The patient may appear to be losing weight through these last hours as the cheeks become more sunken and the face begins to take on a waxy, grayish color. “Skin on bone” has been used to describe the appearance of a patient near death. The patient’s staring may also be disturbing to family caregivers. Watching breathing, counting breaths, waiting for the last breath is rarely helpful. Instead, reading aloud to the patient, playing music, singing, providing a gentle hand or foot rub, or quietly telling stories of the loved one’s life are all activities which will help the family and patient alike. Breathing changes will come as death nears and if medicated properly, the patient should appear peaceful and comfortable.
During the hours to minutes and until death, after the breathing has settled into a consistent rhythm, changes will occur. The patient’s body will seem to relax. The hands and feet become cool to the touch as the body reserves the blood supply for the heart and brain. Eventually mottling (bruising where contact between body and bed occurs) may be observed as an indicator that the patient’s life is preparing for release. The family may note increased time between breaths at intervals of 15-20 seconds until the heart stops beating and the one remaining breath is taken. For the family, this can be a time of deep sadness and grief. For the patient, it is the end of an exhausting journey toward what may lie ahead.
Death is often the termination of an emotional and physical odyssey of years to months to minutes. Yet, families may grieve this process for years and decades to come. Participating in the dying process with all its stressors, beauty, decision making, heart wrenching moments, and feelings of accomplishment and joy is a sacred adventure. When embraced and respected, it can allow the patient to die with dignity in comfort and peace.
Vitas Healthcare. (n.d.). When a Hospice Patient Stops Eating or Drinking. Vitas Healthcare. Retrieved from https://www.vitas.com/family-and-caregiver-support/what-to -expect-from-hospice/when-a-hospice-patient-stops-eating-or-drinking/
American Cancer Society. (2019, May 10). Physical Changes as You Near the End of Life. American Cancer Society. Retrieved from https://www.cancer.org/treatment/end-of-life-care/nearing-the-end-of-life/physical-symptoms.html
Marie Curie: Care and support through terminal illness. (n.d.). Sleep problems. Marie Curie: Care and support through terminal illness. Retrieved from https://www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/symptom-control/sleep-issues
Verywell Health. (2019, June 28). How the Medications in a Hospice Comfort Kit Can Help. Verywell Health. Retrieved from https://www.verywellhealth.com/what-is-the-hospice-comfort-kit-1132481
Pathways Home Health, Hospice, Palliative Care. (2019). Hospice Patients Can
Experience Anxiety and Restlessness. Pathways Home Health, Hospice, Palliative Care.