Resources
Whether it is months, weeks, days or even hours before passing, there is always some level of preparedness, in turn some degree of solace, to be had by everyone involved in this process. From advance planning months ahead to physical and emotional comfort in the final hours, the list of considerations below can be leveraged as a guide to create some sense of control, order, comfort out of this incredibly chaotic, overwhelming, and disorienting process.
Resources
Whether it is months, weeks, days or even hours before passing, there is always some level of preparedness, in turn some degree of solace, to be had by everyone involved in this process. From advance planning months ahead to physical and emotional comfort in the final hours, the list of considerations below can be leveraged as a guide to create some sense of control, order, comfort out of this incredibly chaotic, overwhelming, and disorienting process.
Palliative and Hospice Care
Palliative and hospice care are both used in serious and life limiting illnesses, with a focus on pain and symptom management. The common philosophy behind these two types of care is the emphasis on quality of life.
The key difference between the two types of care is that Palliative care is integrated into existing treatment that aims to cure patients of their illnesses, while Hospice care is only administered when the patients have months left to live and they are not seeking treatment for the purpose of curing their illnesses.
For more detailed understanding of Palliative and Hospice care,
you can visit – what-are-palliative-care-and-hospice-care
For a patient to enter hospice, two doctors would need to agree that hospice care is a viable option for the patient. Every patient usually has a team of healthcare professionals, including doctors, nurses, home health aids, social workers, volunteers, and chaplains for spiritual needs during this process. Many hospices also provide bereavement counseling for 1 year after death.
This care is usually covered by medicaid, medicare, and private insurance. However, it is important to note that hospice does not provide 24/7 care, and requires the appointment of a primary caregiver who can be with the patient 24/7. Family members often assume this role when their loved ones enter hospice.
There are four levels of hospice care to take note of:
- Routine hospice care is provided primarily by the appointed caregiver (usually a family member or a loved one) who lives with the patient 24/7. The hospice medical team is accessible to the caregiver 24/7 for support. Patients are provided with hospital beds, oxygen, medication, etc. at home
- Crisis care is administered by the medical team to take patients out of crisis and return them to a comfortable state. Usually, the nurse care is on 8 hour increments. During this process, the medical team will teach the caregiver how to continue care.
- General inpatient care (GIP) happens when a patient experiences pain that can’t be managed at home by health staff.
- Respite care focuses on providing caretakers with the time to rest
Hospice care can be different by State, so make sure you research hospice facilities and care for your State. Some helpful resources:
Living Will and Advance Directives
Living wills and other advance directives are written, legal instructions regarding the dying person’s medical care preferences if and when the person can no longer make decisions for
himself. Advance directives guide doctors and caregivers to make the right choices for dying patients when they are terminally ill, seriously injured, in a coma, in the late stages of dementia, or near the end of life.
With these documents in place, not only do the dying patients get the medical care they want, but also it relieves their loved ones from having to make extremely difficult decisions during the period of crisis or grief. A few topics should be mentioned for awareness, but further research is warranted as you – either as the dying person or the caregiver – prepare these documents.
DNR and DNI
DNR (do not resuscitate) and DNI (do not intubate) you do not need written advance directives or living will for these two orders, and all you need to do is to tell the Doctor such preferences, and the orders will be included in the medical files. However, it is still a good idea to include these two orders in advance directives or living will.
Living Will
it is a written, legal document that details the medical treatments that the dying patient does and does not want in keeping him alive, as well as preferences for other medical decisions, such as CPR, tube feeding, pain management, dialysis, palliative care, organ donation, etc.
Medical Power of Attorney
This type of advance directive names the person who can make medical decisions on behalf of the dying patient when he is no longer able to. Keep in mind that each state has somewhat different regulations and requirements.
A couple of other notes to keep in mind are
Try to avoid vague language, and be as specific as possible. For example, it would be good to understand the difference between terminally ill vs. actively dying, which in turn can help inform the medical team and the medical power of attorney when it is appropriate to step in with decision-making.
It can also be helpful to specify disease-specific advance directives. For example, someone with ALS will experience muscle weakness from the feet and it spreads, so being able to specify at what stage of the illness which medical measures can or can not be administered can help reduce confusion.
Make sure the advance directive and the living will are easily accessible, and the caregivers know where they are.
Resource:
Legacy Project / Life Review
Legacy projects and life reviews can be a powerful way for the dying to find inner peace and comfort at the end of life. Hopefully it leads them to see lives well lived, cherish the beautiful moments with their loved ones, and release regrets and guilt they might have held onto. As the dying and their loved ones revisit milestones in life, it can reconnect them and strengthen their bond even after the passing.
This can be a very loving process, but not necessarily an easy one to navigate. Death Doulas are trained professionals who can help support, but in their absence, here are some ideas and conversation starters to get the ball rolling, and hopefully it takes all parties to a beautiful place.
Start the conversation positively with questions like “You have raised a beautiful family (or built a successful career, or positively impacted many people’s lives, etc.), which experience was the happiest one that always sits within you?”
Use open ended questions which allows you to deeper, vs. jumping from one question to another. For example, you may ask “you have gone through a lot of changes in your life, what has really stood out to you?”
Then you can follow up with “what did you feel as you lived through that?” or “How did that change your view of life, or impacted your life afterwards?” This way of asking deepens the meaning of the conversation and the connection between the dying and their loved ones. They might even uncover some previously unknown emotional truths that had impacted both of their lives.
Don’t assume their life is free of hurt, adversities and mistakes in their lives. It might be difficult for them to open up about these events, but talking about them can bring tremendous healing and lead them to inner peace. However, explore those areas with caution so as not to cause distress for the dying.
When the dying is closed off or needs some prompters to start talking, there are helpful leading questions to get them to share
- Can you recall and share an experience when you were young, say before 10, that really left an impression on you?
- Where did you live back then? Who did you live with? What was the relationship like?
- What were your struggles?
- Did you have any good friends, and what were they like? Where are they now?
- What are your favorite activities?
Some additional areas to explore can be their accomplishments, formative stories, life lessons, repeated themes in their lives, people of impact to them, their values and beliefs, religion and spirituality, and the roles they have played in their lives.
Try to understand the true emotions behind their statements, especially the “closed” ones. For example, as we hear “my life is pretty simple, I am a stay at home mom, and I really didn’t do much with my life”.
As a loved one, we tend to rush to correct them by saying “oh don’t think that, you have done such a good job raising us” or “but without your sacrifice, I wouldn’t have achieved this much”. By rushing to “save” them, we might have missed the true emotion behind it, which could be regret towards life and void towards death.
At this point, let’s try to hold space for them, allow some silence for that statement to be processed by both parties. We meet them wherever they are emotionally, engage with unconditional love and complete acceptance, and ask deeper exploration questions to allow them to fully express their feelings, realization and growth through its unfoldment.
This can seem like a daunting process, but when it is done well, it brings tremendous meaning to everyone involved. Experienced Death Doulas are trained and well practiced in the art of legacy project and life review, and can be a beautiful addition to the EOL process.
Creating a comfortable environment
The environment for end of life does not need to be bleak and mournful. It is possible to create a light filled and warm place for the dying, caregivers and visitors, which subtly brings a sense of comfort and well being to this end of life experience.
I even heard of a dying person decorating her bedroom with a Christmas theme, because that was her favorite time of the year. She wanted to be comforted by these joyous memories during her end of life. This example was so illuminating to me, because there were no limitations or rules as to what that environment should look like, and the only guiding principle is what brings joy, love, inner peace and comfort for everyone.
That said, here are some thought starters that might get your creative juices going.
Welcome sign at the door. It is hard for friends and family to visit the dying, because they do not know what to say, what to do, or how to act. Everything surrounding death is both frightening and foreign, and it is not something well practiced. The welcome sign captures the philosophies and preferences of the dying person, particularly during their end of life, which can give visitors a sense of ease when visiting.
One example:
“Come to say hello, come to say goodbye, come to tell me about your life, or come to simply sit quietly. Whatever you do, treat me as the person you have always known, and do not let my dying change that.”
Rules of visits
This is more for the dying person. This is your space, so let it be your way. If you don’t like perfume, say so. If you want visitors to take off their shoes, say so. If you want them to be quiet, say so. If you do not want physical contact, say so. Do not hold back, and let your preferences be known, as specifically as you want.
Compassionate presence
This is more for the caregivers and visitors. “Her laughter is contagious!” is probably something we have all experienced in life, right? Even in the absence of words and actions, how we are with the dying person deeply affects how the dying person feels as well, in very subtle yet detectable ways. Hence compassionate presence with the dying person is so critically important. Compassion is neither sympathy which is the feeling of pity or sorrow, nor empathy which is feeling what they feel. It is bigger than both of those. It is the complete acceptance of a loved one’s impending death, acknowledgement of one’s own feelings without being led astray, the ability to hold space for the dying to experience death on their terms without any judgment, and a loving presence to support the dying in ways they need. This compassionate presence is the grounding force for the dying to feel as secure, peaceful and comforted as can be while they experience the end of life. It is extremely difficult for most people to do so, but it is so critically needed during this time. Death doulas can be helpful in supporting this, and in their absence, a daily practice of death meditation can be helpful in building towards that compassionate presence.
Ambience
Drawing from the Christmas example, there need not be any boxes around decorating the space. Some common elements to think about are soothing music, lovely scent, comfortable lighting and candles, room temperature, books / passages for reading, familiar TV shows or movies, slide shows of cherished memories, etc. Sky’s the limit when creating something that brings enormous comfort to the dying person.
Guided meditation
Besides physical comfort, it is also important to create emotional comfort. Guided visuals or meditation can be a great way to bring about the emotional well being of the dying, and the caregivers. There are a lot of resources online, so the dying person and the caregivers can try out many recordings (from Spotify, YouTube, etc.) to curate a short list of their favorites. One thing I have learned is to allow the dying person to share their favorite moments of inner peace and joy. It can be a hike in the mountains, a fishing trip, fruit picking, overlooking the world from mountain peaks, gliding, hot air balloon rides, etc. Then that can become the original source materials of guided visuals.
Five Remembrances
- I am of the nature to grow old. There is no way to escape growing old.
- I am of the nature to have ill health. There is no way to escape ill health.
- I am of the nature to die. There is no way to escape death.
- All that is dear to me and everyone I love are of the nature to change. There is no way to escape being separated from them.
- My actions are my only true belongings. I cannot escape the consequences of my actions. My actions are the ground upon which I stand.
Planning and Sitting for Vigil
Vigil planning can overlap with the creation of a comfortable space during the end of life, in the sense that it aims to bring as much peace, love and comfort as possible. The difference is that vigil focuses on the active dying phase, usually in the final couple of days at the end of life.
Keeping up the comfortable space for the end of life continues to be important in the vigil process. However, there are added elements to consider, such as pain management, physical interactions, skincare, fluids intake, etc. During this phase, likely the dying person is slipping into unconsciousness, so it is important to plan for these preferences ahead of time.
If the dying person has a difficult time opening up to this discussion, try reframing the question to “think of a time when you felt very supported and comforted while overcoming a difficulty. What stands out as the most beneficial and memorable element of that experience?” or “think of a time where you didn’t feel well, what made you feel better and more at ease?”
As a caregiver and loved one, it is important to remember that everyone dies differently, and the dying process needs to be honored, and it should take as long as it takes. So please let go of all expectations and simply stay compassionately present.
The well being of caregivers and loved ones is also an important element of Vigil Planning, so enlist a support circle for emotional support, as well as implementing shifts of vigil sitting in case the process is longer than expected.
Signs of Active Dying
The dying process can last days, weeks, months or longer depending on the cause. However, the active dying phase typically means that there are only days or even hours left before the final passing. While everyone dies differently even under similar health conditions, and we should allow it to take as long as it takes, there are some common physical signs to be aware of. As we observe them, we should plan to finish any final details and affairs quickly..
1-3 months before passing
- Attention turns inward and the mind drifts
- Engages less with the world and with other people
- Sleeps more as they have less energy
- Finds daily activities more difficult
- Feels weaker and is prone to falling
- More frequent ER visits
- Difficulties with continence
Last week
- Eyelids partly open but not seeing
- Jerking or twitching
- Little urine production (because they are now drinking less)
- Open mouth breathing
- Generally unresponsive
- Terminal lucidity which is a brief 2nd wind of energy, the dying can open their eyes and even speak. It could last minutes to a day before passing
Last moments:
The nervous system breaks down
While it’s possible that they can no longer feel the pain, we can’t assume that. For example, cancer patients with cancer spreading to their bones will likely experience extreme pain all the way till the end, so even though they are non-responsive, it might still be important to administer pain medication.
Respiratory shutdown
During this time, breathing can slow down to 4-5 times/minute. Breathes are very shallow and upper chest only. Apnea also lengthens to 30-60 seconds
1 month - 2 weeks before death
- Sleeps or drifts much of the day
- Eats very little or stops altogether
- Drinks less
- Difficulty swallowing
- Breathing irregularity or apnea
- Increased need for physical care
- Disoriented and confused
- Visions of people who died previously
- May speak about dying
- Increased swelling in extremities
- Wounds do not heal
Final hours
Mottle which is smears and spots of colors on any surface. This is due to the declining heart function, which leads to toxin build-up in veins and arteries, and the skin is too thin to cover it due to dehydration.
Cyanosis which is a bluish discoloration of the skin resulting from poor circulation or inadequate oxygenation of the blood. It typically starts from the tip of the fingernails or toenails, then on the soles of the feet and palms of the hands.
Cardiac shutdown which is typically manifested as irregular or weak pulse
Medical Aid in Dying (MAID) and VSED
Hospice and palliative care only do so much to relieve pain and suffering during the end of life. When death is imminent, and the pain is insufferable and unmanageable, we need MAID (medical aid in dying) and VSED (voluntarily stopping eating and drinking) as options to hasten death and release the dying person from such sufferings, if the dying person so chooses.
It is important to note that MAID is only legal in 11 states as of 2022, while VSED is an option available to any dying person as there is no law prohibiting anyone from stopping eating and drinking. If this is something the dying person desires, consultation with their attending physicians is critical as MAID is a very rigorously regulated process, and it is also important to understand the best option for the dying person. https://compassionandchoices.org/ provides some very good knowledge and insights into this topic.
Below is a very high level overview of what MAID and VSED look like, but be sure to research thoroughly, and consult with the attending physicians to help the dying person make the right decisions.
MAID
The dying person needs to be an adult
Terminally ill with a prognosis of less than 6 months
Mentally capable of making this decision
Ability to self inject the prescribe drug without assistance
All alternatives need to be discussed with the dying person
Discussion of what to expect after the intake of the drug is required
The dying person needs to know their right to withdraw the request at any time
Request for loved ones to be present
There needs to be 2 requests 15 days apart
The dying person needs to sign the form saying that they are not required to take the drug
Death usually comes within hours of taking the drug
Most importantly, research thoroughly and consult with attending physicians to understand state specific requirements, and help the dying person make the right decision
VSED
Natural way to die, and it is legal to voluntarily stop eating and drinking
Cause of death is usually dehydration not starvation
Continued access to hospice and palliative care
Terminal prognosis is not needed
Usually within 7-14 days
Last stage could be confusion, but can be medically managed
While doctor prescriptions are not required, it is still very helpful to consult with the attending physicals to better understand this process. Additionally, the medical team can closely monitor the process and provide any pain management as needed, which enhances the process.
Choosing to hasten death remains a very controversial topic in our society. Both sides feel very strongly about their beliefs. Some key opposing reasons include the fear of promotion of suicides, fear of foul play, religious beliefs, fear of causing the incapacitated person to feel pressured to take this option.
After Death Care, Funerals and Burials
In our society today, death is very sanitized. After passing, the body is quickly taken away for funeral preparations. The next time the family sees the deceased loved one, they are well dressed, cleaned and neatly positioned in the coffin for everyone to say goodbyes. The whole process feels clean and efficient, yet some intimacy seems to be lost along the way.
In many cultures infused with traditional wisdom, the family often partakes in the intimate moments of cleaning and preparing the body. While this seems “messy”, it can be naturally healing as we move through grief. The family can spend some final intimate moments with their loved ones, say their final goodbyes, simply sit, reflect and remember, with a sense of deep connection and hopefully complete acceptance.
As our modern society evolves to adopt traditional wisdom from other long lasting cultures, we brought about death positive movements, along with home funerals and green burials. In this movement, we recognize death as part of life and part of living. We come from earth, and we return to earth. There are many rich sites that discuss after death care, home funerals and green burials at length, so I will keep my summaries short.
Home Funerals
3 days seems to be a sacred number after death in many cultures – Buddhism, Christianity, and others as well.
It is believed that is how long energy (or soul) fully exits one’s body.
Whether you believe it or not, allowing some time between the passing and funeral gives families and friends the time to process, to arrange affairs, and bid their farewells.
Today, the majority of the funerals take place in traditional funeral homes. It is a well established service and streamlined process that relieves the grieving families from many logistics.
We won’t focus on this option as it is easily accessible to most people. Instead, I want to direct our focus to home funerals, which often is a natural extension from at-home body preparation.
Home funerals put the family in charge, it is intimate, allows more time for goodbyes, and has the power to bring a community together. It also eliminates the need for toxic embalming which is better for the environment. It allows the family more freedom in honoring their culture, religion and family traditions. It also saves money and resources (for both the family and the society).
Without the equipment and supplies readily available, it does take some advance preparation.
There are a few things to consider during the preparation
Involve children in the process
Dying at home
Nursing homes
Burials
There are usually three options for burial
Cremation
Green Funerals
Non Decaying Casket
Cremation and Non Decaying Casket are most common while the green funerals are still fairly new and foreign to most people. Green funerals focus on caring for the dead with minimal environmental impact, and returning the body back to earth. Some interesting options for green burial are listed below, but please visit Green Burial Council for detailed information, education and resources.
- Turn ashes into a smooth river rock like rocks
- Turn ashes into fertilizer
- Turn ashes into coral reefs
- Water cremation is a natural organic reduction approach
- Paper urns that dissolves in water
People can also choose to be buried in easily degradable shrouds, allowing their bodies to return to earth and nurture life. This has even less environmental impact as cremation still requires quite a lot of fuel to perform, albeit better to the environment than non-decaying caskets.
Spiritual Beliefs and Rituals
For many, death is the end, it is so final that nothing else happens after death. However, for others, death is a deeply spiritual event, hence it is only natural that some spiritual beliefs and rituals are infused into after-death care, funerals and burials. Here I will share what I have learned, and hopefully it is interesting, intriguing and informative.
Many ancient cultures believe we have energy bodies infused with our physical bodies. We call it soul, aura, light body, etc. Chakras have become a popular concept in recent years, and they are believed to be key connection points between the energy body and the physical body. Though called differently, ancient cultures such as Indian, Chinese, Japanese and more all believe such energy centers exist all over our bodies. Yoga, Tai-chi, Reiki are all energy works that aim to align our physical bodies with our energy bodies, and bring forth well being. When our physical bodies die, even after our heart stops or breathing stops, the energy bodies take a while longer to disengage from our physical bodies.
When people die of old age or natural causes, their physical bodies are worn out, so the energy bodies leave more easily because it is time. For younger people who die suddenly of accidents, suicides or other unantural causes, their life energy is still strong, so their energy bodies will take longer to fully leave.
Based on this belief, it could be ritualistic and spiritually comforting to do a couple things.
Now that they are in the state of pure consciousness, the first few moments can be disorienting. Hence, it can be helpful to verbally state “you have died, and we are now going to clean and prepare your body for the funeral. You are welcome to stay close. We are going to leave your body here for 3 days so your loved ones can come and say goodbye from near and far.”
Before preparing the body, we can close out the 7 major chakras by making counter clockwise motion on each of the 7 chakras. This way we acknowledge that this physical body has died, the energy centers are closing, and it’s time to completely exit. You can even add a few words of gratitude for the service these chakras have performed for this life experience. For example, for the root chakra, we can say “thank you for enabling the soul to experience the vitality of life”. For the sacral chakra, “thank you for enabling the soul to experience the rich emotions of life” etc. For the crown chakra, “thank you for enabling the soul to experience letting go and rebirth, we now invite you to let go, close the sacred center as you leave this physical body”
In Shamanic cultures, the Shamans would sometimes do a death spiral which is a counter clock motion that starts from the heart chakra and expands to the entire body. This signifies the collection of all remaining life energy and sending it back to the universe.
Grief
Within grief, there is a strong sense of groundlessness and we do not know how far we would fall before reaching the bottom. We feel a persistent disbelief and denial, and we experience the same world as a surreal place where we are lost. It is a natural response to loss, and it is healthy, spontaneous and unavoidable. As we face the impending passing of our loved ones, we imagine life without them, and we can experience anticipatory grief also. Some people akin grief to a roller coaster ride in the dark; that feeling of being out of control, alone, going through countless ups and downs, being blindsided by intense feelings without warning, and simply emotionally exhausted. We don’t know how long grief will be, when it will strike, and when it will leave and then come back. No matter how much we try to will ourselves out of it, grief has its own timing, and follows a non-linear path that we need to allow ourselves as long as it takes to heal.
As the loved ones left behind, we need to find our support circles – friends, family, grief counselors, support groups, etc.. We don’t have to do this alone. As part of the death positive movement, Death Cafes came to existence where like minded people openly discuss death. They normalize the death experience and provide support for the grieving. Another wonderful addition through the death positive movement is death doulas. They are not just there for the dying loved ones but also for the family left behind. They are skilled at providing grief counseling and if they have been supporting the family throughout this process, their compassionate presence alone can help bring some comfort to the grieving. We will talk a bit more about death doulas in a later section.
Resource:
The Eleventh Hour: A Caring Guideline for the Hours to Minutes Before Death
Death Doula
Though the name is new, this “profession” or “service” has been around for eons. As human consciousness and awareness evolve, we brought about the death positive movement, and Death Doula is the name given to this group of people who have been selflessly and tirelessly providing service to the dying and their families. They have been performing this mission critical role way before a formal title, definition or recognition was officially given to their contribution. Many of them worked or volunteered in hospice before Death Doula evolved to a paying profession. Having met many of them on my journey, I have observed one commonality – they are the “heart to heart” people, they feel people’s sorrowful hearts, and they are drawn to use their own love and light to help guide the dying and the grieving out of the valley of pain and suffering.
Many experienced death doulas perform a wide range of support.
- They provide good companionship, compassionate presence, and hold space for the dying and the grieving to fully express their emotions with complete acceptance.
- They can conduct legacy projects and life reviews to bring meaning to life and death.
- They spend the time to truly know the dying and their families, learn their culture and preferences, cultivate and respect their inner wisdom, without judgment.
- They guide the families through this complex process, and connect families to helpful resources.
- They can help with vigil planning and vigil sitting to ensure the last moments are comfortable and meaningful to the dying and the living.
- They provide continued presence after death, and hold space for the family to share their feelings and reprocess the experience as they move through grief.
