By: Barbara Karnes, RN
barbarakarnes@bkbooks.com
Patient Comfort At the End-of-Life
Comfort as Death Approaches
By Barbara Karnes, RN
Hospice Educator/Author
COMMENT: “The effectiveness of liquid morphine & Ativan seemed inadequate. The 'active dying' process took six days---no food, no water, and it seemed her body began to decay before our eyes. Even the hospice nurses were somewhat surprised at her strength. We were able to give her wonderful care at home, and hospice was a valuable resource, but strongly opposed to the use of a narcotic patch for additional comfort care, despite our calm but assertive concerns. Finally did start the patches, and wished they could have been started sooner. We still struggle with the memory of those final days, and the periodic suffering she experienced. Your book “Gone From My Sight” was so helpful to us. Perhaps the concerns I've raised belong under a different topic of your blog.
Barbara: There are several areas in the above comment I am going to address: comfort management, use of a transdermal patch, the normal dying process and being at the bedside watching someone we care about die.
Comfort management: Pain is unique to each individual. There is no one dose, one kind, one method that fits all. Unlike the old adage, “Take two aspirin and call me in the morning”, end of life pain management requires time and experimentation to reach a comfort level. Closeness to death itself also affects how medications will be responded to. The closer to death the less circulation there is to distribute the medication throughout the body.
Use of a transdermal patch: A patch is pain medicine commercially put into patch form and applied directly to the skin. Some end of life care professionals like and use the patch system, others do not. I personally do not use the patch if the person is within days of death for a couple of reasons. Early in the disease process a patch can be an excellent source of pain relief but when very close to death, circulation is poor so absorption is poor. Mainly, a patch is a specific dosage for a specific time period and what is needed as death approaches is the ability to regulate the dosage and time frame to each individual. Patches and time release medications do not allow that latitude. If the person is non responsive and unable to swallow but agitated and pain has been a part of their disease process then medication can be given rectally or made into a creme and rubbed onto the skin. Generally there is no need for invasive injections or IV medications.
The dying process: In the one to three weeks time period before death a person enters what I refer to as labor. That labor is harder on us the watchers than it is on the person who is actively dying. The person who is dying is so removed from their body they are not experiencing it in the same way that we, the watchers, are perceiving.
In those days to weeks before death the person is not eating or drinking or they are taking so little fluids we believe they can’t possibly be comfortable. This is the time the body is shutting down, letting go of its hold on this life, dying. No food, no water in the last days of life is perfectly normal. That is how we die. It is not uncomfortable or painful to not eat or drink at this stage. It is actually uncomfortable and disruptive for the dying person if we force food and water in the days to weeks before death.
This is a short explanation about a complicated subject. Watching someone we care about in the dying process is frightening, stressful and generally misunderstood. Knowledge reduces fear but it is generally after the fact that we begin processing and asking questions.
This video (to the right) entitled, “What Can Be Done About Pain at the End of life?” provides information about pain management options at the end of life. It also discusses myths surrounding the use of opioids in Hospice care.
For more information, please visit their website: https://www.nia.nih.gov/health/providing-comfort-end-life
(Video: 4:17 minutes)
End-of-Life: Managing Mental and Emotional Needs
Complete end-of-life care also includes helping the dying person manage mental and emotional distress. Someone who is alert near the end of life might understandably feel depressed or anxious. It is important to treat emotional pain and suffering. Encouraging conversations about feelings might help. (If the patient is receiving care from a hospice team, request a visit from the hospice Social Worker/Counselor if your loved one agrees.)
A dying person may also have some specific fears and concerns. He or she may fear the unknown or worry about those left behind. Some people are afraid of being alone at the very end. This feeling can be made worse by the understandable reactions of family and friends. For example, when family and friends do not know how to help or what to say, sometimes they stop visiting. Or, someone who is already beginning to grieve may withdraw.
The simple act of physical contact—holding hands, a touch, or a gentle massage—can make a person feel connected to those he or she loves. It can be very soothing. Warm your hands by rubbing them together or running them under warm water.
Try to set a comforting mood. Remember that listening and being present can make a difference.
(Excerpts from https://www.nia.nih.gov/health/providing-comfort-end-life#emotional)
Spiritual care at the end of life; how to reduce distress as we face dying
By Heather Wiseman
Being reminded of the value they have added to others through relationships can help people trying to reconcile their life's achievements.
There is a form of suffering at the end of life that has nothing to do with physical pain. Existential or spiritual pain can cause great distress, which is why psychological, social and spiritual care is such an important part of palliative care. So how does spiritual care differ from pastoral care and what issues tend to distress us in our dying days? Palliative Matters asks Andrew Allsop, Psychosocial and Spiritual Service Support Manager for Silver Chain and a Palliative Care Australia Board member.
Having cared for many people as they face the reality of their own death, Andrew Allsop has heard first-hand many issues that can cause significant spiritual distress. Generally, spiritual distress is related to the dying person’s life story; their connections to people and places and the events and experiences that have given their life meaning and purpose.
Mr Allsop, who manages psychological and spiritual support for Silver Chain, says the concept of spiritual care is often confused with religion. While for some people the two concepts overlap, for others there is a significant distinction.
“Religion is for many people one of the ways they might conceptualize and experience their spirituality. For some people, religion might define their spirituality completely, whereas for a lot of people it may be just a component. For many more, religion may have no place in their spiritual world view at all.
“When we are looking to understand a person’s spirituality, we are looking at all the things that give meaning and purpose to a person’s life. Spiritual care is about trying to develop an understanding of the issues that are significant to a person.
“If they’re experiencing significant spiritual or existential distress, then it is then trying to get a sense of what is leading to that. They may be feeling incredibly isolated, totally disconnected, demoralized and have a sense of hopelessness, because they are struggling to really come to terms with what their life has been about. They may need support as they grapple with what has given their life meaning and what will sustain the life they have left.”
Mr Allsop says providing spiritual care requires being fully present to what the dying person is experiencing, rather than minimizing it, distracting from it, or looking for a cure.
“Nothing is going to solve it. It’s not about trying to fix something. It’s actually being present to that person’s feelings, pain or grief, whatever that might be. It’s then trying to help people develop a sense of meaning where they feel there hasn’t been any, or there isn’t any.”
Mr Allsop says there is mounting international evidence that tailored spiritual care can improve general health outcomes. However, palliative care is one of the few specialties which recognizes the importance of spiritual care.
While spiritual care workers may have particular skills in engaging with people on issues of spiritual significance, it is important for all health professionals to have a sense of how important spirituality is for their patients, and for themselves.
“How we frame it is unique to each of us,” says Mr Allsop.
“It’s about listening and validating the life that a person has led.”
(Excerpt from: https://palliativecare.org.au/spiritual-care-end-life-reduce-distress-face-dying/)