Active Dying Comfort Care

Yes. If your loved one is unconscious or too weak to move of their own accord, regular repositioning can help keep them comfortable and prevent pressure sores. This is particularly important during the pre-active dying phase, since it can last for several weeks or more, and pressure ulcers can develop very quickly during this time. Also known as decubitus ulcers, these wounds can be devastating and can quickly progress from a small, reddish discoloration of the skin to an open sore that exposes fat, tendons, and — eventually — bone. 

To prevent skin breakdown in your dying loved one, good skin care is essential. When you turn your loved one, gently massage any pressure points, paying particular attention to bony protuberances such as elbows, heels, shoulder blades and hips. Applying a non-cosmetic emollient cream such as shea butter, cocoa butter or vaseline can help keep the skin moist and promote skin integrity as well. You may also want to speak with your doctor or hospice provider about getting your loved one heel and elbow protectors. Usually made from gel, foam, or synthetic lambswool, these devices are easy to apply and remove and help offload pressure on the affected areas. 

Be aware, too, that if turning your loved one causes pain or discomfort, you can ask your hospice provider or doctor about adding an “as needed” pain medication that you can administer shortly before they’re scheduled to be turned. This is a good idea even if your loved one is receiving pain medication on a round-the-clock basis, since turning and repositioning can cause baseline pain to escalate. A short-acting opioid such as Fentora (a form of the synthetic opioid fentanyl that dissolves in the patient’s mouth) or hydromorphone (Dilaudid) are usually good choices because they act quickly and stay in the system for a relatively short time, says WebMD. 

Sources

“Bedsores (pressure ulcers)”. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/bed-sores/symptoms-causes/syc-20355893 

“Fentanyl transdermal (Duragesic) – Uses, Side Effects, and More”. WebMD. https://www.webmd.com/drugs/2/drug-6253/fentanyl-transdermal/details 

“Pain Relief & Breakthrough Pain”. WebMD. https://www.webmd.com/pain-management/features/pain-relief-breakthrough-pain

Although it’s natural to be concerned when your loved one stops eating and drinking, it’s not a good idea to try to force a dying person to eat or drink. Food is a source of physical energy, and a dying person no longer needs energy for the activities they once enjoyed. As bodily functions slow down, the need and desire to eat diminish naturally. And as difficult as it may be to do so, you need to honor this truth. 

The main goal of caring for someone who is dying is to keep them as comfortable as possible. A large part of that task involves understanding and respecting the physical changes that are taking place. Many loved ones mistakenly believe that food and fluids can “revive” a dying person, or help them “keep their strength up.” But this simply isn’t true. In fact, forcing a dying person to eat or drink may actually be harmful. Even a small amount of food in your loved one’s stomach may cause bloating, indigestion, nausea or even vomiting. And forcing fluids on someone whose kidneys are shutting down may increase discomfort rather than alleviating it. 

Instead of trying to encourage your loved one to eat or drink, offer them tiny sips of water from a spoon or a syringe (if they are able to swallow). Cleaning their mouth frequently with cotton swabs dipped in ice water or toothettes may also help by keeping mucus membranes moist. 

With that being said, if your loved one does seem interested in food or liquids, it’s fine to let them try to eat a small amount of foods they may enjoy. Chewing will probably be difficult, so offer them soft foods such as oatmeal, mashed potatoes, eggs or yogurt, or liquids such as milk shakes, soups or ice cream. To prevent choking or accidental aspiration, feed the person while they are sitting up and only in small amounts. Remember, too, that a dying body doesn’t need a healthful diet. If your loved one wants to eat chocolate pudding five times a day, that’s completely fine.

Yes, you should continue to talk to your loved one, even if they are no longer able to respond. When someone is near death, various body functions will begin to decrease, and this may mean that it may become more difficult to awaken your loved one or that they may shift in and out of consciousness. Even so, most healthcare professionals agree that the best course of action is to always assume that your loved one can still hear you.

A study conducted in 2020 monitored the brain activity of terminally ill patients for two years. The patients were fitted with an electroencephalogram (EEG) cap that recorded the brain’s electrical impulses. Due to the nature of the patient population, it was difficult for the researchers to maintain a significant sample size to achieve generalizability. However, findings indicated that even when patients had shifted into an unresponsive state, they could maintain brain activity indicative of concentration and consciousness. This level of maintained consciousness may ultimately suggest that patients could hear and process their surroundings despite being unresponsive.

Even if your loved one is no longer able to respond to you, your words and your presence still have significant meaning and can provide a sense of comfort. You can express your love for them, reflect on your shared memories, or simply remind them that you are there for them during these final moments. If you have decorated the room or made an effort to create a more peaceful environment, you can describe what’s in the room. Ultimately, engaging in the way that feels the most natural and supportive is always a suitable way to honor your loved one. 

Sources

“Even After Dying Loved Ones Become Unresponsive They Can Still Hear You: UBC Study.” Capital Daily. https://www.capitaldaily.ca/news/ubc-study-hearing-death 

“Hospice Care: Symptoms of Approaching Death.” University of Rochester Medical Center. https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=34&contentid=23507-1 

Palliative sedation and euthanasia are two distinct end-of-life options. Palliative sedation is a process in which a patient with refractory symptoms is given medication to initiate a state of reduced awareness, even unconsciousness, in order to relieve symptoms and suffering. Euthanasia involves actively ending the life of a terminally ill patient to relieve suffering. It is illegal in most countries and is highly controversial due to its complex moral ambiguity.

Palliative sedation falls under the umbrella of palliative care, which involves easing a patient’s discomfort and pain, both physical and emotional, and is focused on improving quality of life rather than extending it. Though palliative sedation can be used to ease the pain and distress associated with an illness, it is one of the most highly debated palliative care practices, and there are ethical considerations around its use.

Ethical concerns of palliative sedation

Although palliative sedation and euthanasia are distinct treatment options, there are a number of ethical considerations around the use of palliative sedation that have yet to be resolved. These include:

Reduced patient autonomy

Because palliative sedation can involve inducing diminished or absent patient awareness, there are concerns that the recipient will be unable to change their mind or give informed consent about the treatment once it is underway, and that lucidity may not return.

Use in non-physical suffering

End-of-life existential distress can cause significant suffering in terminally ill patients. However,  because there is no consensus in defining or gauging the level of suffering — nor in measuring the effectiveness of treatments — the role of palliative sedation in this regard is controversial. The American Academy of Hospice and Palliative Medicine recommends exploring “vigorous multidisciplinary efforts” that include professional input from outside the patient’s palliative care team, such as from therapists, psychologists, or spiritual counselors. 

Potentially hastening death

Palliative sedation can result in a greater risk of respiratory depression, aspiration and heightened agitation from delirium. However, because these are side effects of the treatment and not the goal, many clinicians argue that the practice is appropriate as long as the patient, their family and the medical team are aware of the risks. Additionally, several (admittedly aged) studies indicate that palliative sedation does not hasten death, but rather provides a more comfortable death experience. 

Continuous deep sedation until death (CDSUD)

One of the most extreme forms of palliative sedation, CDSUD is also one of the most controversial. Ethical questions arise surrounding the very deep level of sedation, and that the treatment is not reversible. Further, studies have shown this course of treatment is often requested by patients after a request for euthanasia is rejected, and could be prompted by existential distress or depression.

Despite the not-infrequent conflation of palliative sedation and euthanasia, they remain two distinctive treatment options — both with their fair share of ethical debate. Palliative sedation remains the more nebulous concept of the two, with a lack of consistent definitions and treatment protocol another part of the ethical concerns. 

Any decisions regarding palliative sedation should be taken with due consideration for the individual’s wishes and those of their family, alongside the input of a palliative care medical team. With careful planning and open communication, patients can receive the end-of-life care, including palliative sedation, that best meets their needs.

Sources

“Ethical challenges in palliative sedation of adults: protocol for a systematic review of current clinical practice guidelines”. BMJ Open. https://bmjopen.bmj.com/content/12/7/e059189 

“Palliative Sedation: The Ethical Controversy”. Medscape. https://www.medscape.org/viewarticle/499472 

“Palliative Sedation”. American Academy of Hospice and Palliative Medicine. https://aahpm.org/advocacy/where-we-stand/palliative-sedation/ 

“Palliative Sedation in Patients With Terminal Illness”. StatPearls. https://www.ncbi.nlm.nih.gov/books/NBK470545/ 

“Palliative sedation therapy does not hasten death: Results from a prospective multicenter study”. Annals of Oncology. https://www.researchgate.net/publication/26307271_Palliative_sedation_therapy_does_not_hasten_death_Results_from_a_prospective_multicenter_study 

“Deep continuous patient-requested sedation until death: a multicentric study”. BMJ Supportive and Palliative Care. https://spcare.bmj.com/content/13/1/70 

Holding space for someone involves creating an environment of openness and unconditional acceptance. It requires leaving one’s ego at the door to foster a climate where the other can share whatever feelings or thoughts they have without being judged or censured. Holding space for someone who is dying can provide comfort, compassion, and a sense of connection that allows the individual to feel seen and heard in their final moments.

Holding space isn’t about providing solutions, advic,e or opinions, but is instead focused on offering emotional support and gentle presence, and allowing people to express the full range of their emotions in a safe environment. It can help open communication channels for meaningful conversations and provide the opportunity to come to terms with difficult issues. 

Ways to hold space

When holding space for someone, including in a situation where someone is dying, chances are they are feeling vulnerable. So it’s important to be aware of how your presence — including your language and body language — could impact them. Gentleness and good listening reign. To create an atmosphere of safety, security and emotional support, consider the following:

• Show up fully: Be present not just in a physical sense, but emotionally and mentally. Put aside all external distractions and give the person your undivided attention.
• Leave your ego out: This is a time to serve others and is not about you. A sense of humility and suspended self-importance is necessary in allowing another person to feel safe.
• Listen actively: Do not interrupt or try to offer solutions — just listen to what they are saying and help validate their feelings. At times, silence can be comforting. Don’t feel the need to fill every moment with words.
• Be nonjudgmental: Accept the person and their emotions without passing judgment. This can provide them with the freedom to express themselves in their own time and way.
• Practice patience: Holding space can be a long journey. Allow the person to express their feelings and process emotions at their own pace.
• Make them feel empowered: Even if you are involved in making decisions about their care, it’s important to honor their wishes as much as possible. Relatedly, overloading someone with information and instructions can feel overwhelming — be mindful of how much someone can process. 
• Maintain an open heart: Show compassion and empathy towards the person. Make sure they know that they are loved and cared for.
• Use comforting body language: Ensure your body language is soft, welcoming, and comforting. Your physical presence can communicate as much or more than words.

Holding space when someone is dying is a beautiful way to honor their life, to share in the experience, and provide understanding and love. It’s a powerful gift that can help bring peace, comfort, and closure to all those involved. 

Sources

“What It Means to Hold Space for Someone”. Tragedy Assistance Program for Survivors. https://www.taps.org/articles/27-2/hold-space-for-someone 

“Holding Space”. Mirasol Health. https://hospicecarelc.org/holding-space-quality-end-of-life-care/