Walk with me to the water when it comes my time. 

What we say will not matter, just keep your hand in mine.  

I’ll cross the water by myself, I know that’s what I must do. 

      But the chilling sting won’t be felt because I’ve walked with you.                        

–Nellie Keller

The goal of accompanying someone on their end-of-life journey is to create a sacred and safe space for them to be able to release from their body.  There is a distinct difference between caring for someone who will get well and recover, and someone who has a terminal condition. 

The process of dying is highly individual, and the following information is a guideline only. 

Canada allows people to choose Medical Assistance in Dying (MAiD).  The reasons a person may want to use MAiD are varied and complex, extreme pain being one of them (physical & emotional pain).  Depending on disease trajectory, some people may fear becoming a burden on their family and friends and choose to die with dignity.

For people who wish to let their body shut down, like the stages of labour during birth, there are somewhat predictable stages.

 

MIND:      Emotionally, the level of shock or degree of dissociation when faced with a terminal diagnosis eventually morphs into a degree of acceptance.  The dying person will typically have done their own self-reflection and life review.  Elisabeth Kubler-Ross described the stages at end of life as: Denial, Anger, Bargaining, Depression, and Acceptance. 

1 to 3 months:  Decreased consciousness and a gradual separation of your person’s interest in the outside world (news, TV, newspapers, etc.) and more time spent withdrawing and sleeping.  As someone prepares for their final journey into the unknown, beliefs such as that loved ones will meet us, or whatever we have learned through religious or spiritual teachings may be comforting.  As outer awareness of the dying person declines, speak slowly & clearly to avoid confusion and allow for understanding.  Of note, some people lose their ability to communicate verbally.

 

BODY:      Barbara Karnes, R.N., describes our bodies as being like an eggshell surrounding our life force inside.  Food has such a cultural significance in our lives, it’s difficult to withhold nourishment from those we love.  As the need for calories decreases and the digestive system shuts down, there is more room for gentle loving energy, soft touch, and soft-spoken words.  Studies suggest that hearing is the final sense to go.

1 to 2 weeks:  Confusion/Disorientation occurs as sleeping increases although it is still possible to wake your person for brief periods.  You may notice your loved one talking about people, places, and events that have happened in the past, as their focus is changing from this world to the nextMaggie Callanan & Patricia Kelley, in their book Final Gifts, teach that some hospice patients appear to prepare for their final journey. 

Days before dying:   Physically, your loved one’s body will begin to shut down, often indicated by lowered blood pressure, pulse rate, and a fluctuation in body temperature, with the extremities becoming colder and possibly bluish in colour as blood circulation lessens.  Temperature may alternately increase with skin redness and perspiration.  Breathing may fluctuate between rapid respirations to a decreased number of breaths per minute.  Fluid congestion may increase, sometimes resulting in a rattling sound in the lungs and throat.  This is not uncomfortable for the person, but the healthcare practitioners will monitor breathing and whether appropriate medication or treatment may be warranted.

 

Pain Management at end of life is carefully monitored on a daily, then hourly, basis.  It is helpful to note that pain medication is most effective when it is continuously administered rather than waiting for pain to increase.  Although a strong dose of medication may be given right before a person dies, keep in mind it is the disease process or body shutting down that is contributing to the death, not the fact that pain medications were given just prior.

 

SPIRIT/SOUL:      Energetically, our bodies begin to work less hard, depending on the disease process. Near Death Experiences (NDE’s) have given us a window into what to expect on the “other side” and palliative care specialists have been able to map the similarities between how people die. 

Depending on your person’s beliefs, they may engage in some ‘other-worldly’ types of experiences.  Now is the time to call in the religious leader for your family or you may wish to say a prayer or meditation to help your person prepare to leave this life.  If you don’t have a religious leader, consider that perhaps our consciousness/soul/life-force energy is returning to where it was waiting before we were born into our body. 

Sitting Vigil around your person:

Every time you leave your person’s bedside, even for a few minutes, say goodbye.  There is an increasing amount of research being done on consciousness and dying.  This research suggests a person decides the timing of when they leave their body, and they may wish to do so alone or with very few people near them. 

Set up the physical space to include things that are special and meaningful, including soft lighting and electronic candles.  Do they love big band music, disco, or peaceful waterfalls?  Might the younger kids in the family be able to draw some pictures or write poetry/stories?  Generally speaking, kids are fine to attend the vigil of a family member or friend dying as this allows children to be a part of the process and say goodbye, and to learn that dying is a natural part of living.

A note on terminal lucidity or end of life rallying:

When a dying person suddenly becomes more aware and appears to stabilize (perhaps eating or talking more) this may be taken as a hopeful sign by friends and family.  It may feel confusing as you have become prepared for the person to die, then this spark of recognition and clarity is evident. 

There is no way to predict how long this surge in energy will last, as each person is unique in the way they live and in the way they die.  You may choose to see this rally as a gift, a short moment in time when connecting with your loved one is possible before they die.

Feel free to ask questions of your person’s healthcare team.  If you aren’t clear, ask again or ask another medical team member.  You and your family are also members of the care team, so stay mindful of the amount of sleep, nutrition, and water you need while you are on this path together.

Michelle Suzanne Scott, RSSW #820505 April 2021 (Rev: February 2025)

More info on palliative and end-of-life care may be found at: virtualhospice.ca, thevitalbeat.ca, Barbara Karnes, RN & The Centre for Sacred Deathcare, and HospiceNurseJulie on Instagram