For more information about the author, click to view their website: https://www.carsoneldercare.com/
“What We Don’t Know We Don’t Know in
Health Care:”
The Importance
of Keeping Our Loved One Comfortable Towards End of Life, and Why It’s Often Not
Done.
Introduction:
Maintaining comfort and peace in individuals that are
nearing the end of life is so important, yet too often I do not see this being
done. I was recently privy to a situation where, per family report, their aging
loved one was in a facility and restless for ‘days on end’ without any
intervention. I mentioned to the family that they may want to ask for some
medication to relieve their loved ones’ restlessness. One of the family members
reported back that within hours of our conversation, their loved one received
such a medication. The family stated after receiving this medication that he
was the most peaceful he had been ‘in over a week.’ I could feel the relief in
their voices. Unfortunately, I have seen this so often that it was the impetus
for my next blog subject.
Factors:
I see multiple factors accounting for why individuals
approaching the end of life are not made as comfortable as they should and could
be. At facilities, one common reason is due to the transitional period that
occurs once an individual or family decides they want to move from aggressive
treatment to hospice or palliative care. Generally, once these wishes are
expressed, a hospice consult is placed. It often takes time (sometimes up to a
day) for the hospice team to evaluate the individual. Unfortunately, facility staff
often wait until the evaluation is complete prior to initiating comfort
care protocols. This does not need to be the case. Staff can initiate comfort
protocols by reaching out to a practitioner to request orders. Many staff
either do not appear to realize that they can initiate this order set or are
too busy to do so. The bottom line is
that if the individual and/or family has consented to comfort measures and no
aggressive treatment, protocols can and should be implemented right then
and there. It often takes probing from an advocate or a family member to do so.
Another reason individuals do not receive comfort medication
at end of life is due to the practitioner being unaware of their discomfort.
With the overburdened medical system, practitioners often do not get to spend
ample time with their patients. They often only have a few minutes to round and
hence may be unaware of their patients’ pain, agitation, or restlessness. This
is where it can be helpful to have an advocate or loved one relay to a
practitioner the observation that the senior individual is in distress. Much
like a mother is attuned to her infant, often family members or others
intimately familiar with an individual’s behavior are the ones that pick up on
subtle cues of discomfort or distress. In the situation I described above, the family
of the restless individual stated the health care team appeared unaware of the
individual's discomfort. One of the family members was with the loved one for
hours on end, and she stated that his restlessness was very intermittent. With that being the case, the restlessness
could easily be overlooked by staff. In addition, facility staff are extremely
busy and may not take the additional time to communicate restlessness to
practitioners unless asked to do so by an advocate or loved one.
One final reason I see individuals at end of life not
receive adequate comfort medication is due to reluctance of staff to provide adequate
comfort medication. Many nurses are hesitant to administer reasonable amounts
of such medicine for fear of ‘hastening’ death or ‘euthanizing’ someone. I
generally do not see this with hospice or palliative care staff as they have
ample education on the importance of maintaining comfort in end of life and how
to do so. I instead see this with general facility staff who may not have the
training or experience in palliative/hospice care. Years ago I was sitting with
family in a hospital room of their loved one as he was passing. The individual
was clearly restless: pulling at his tubing and attempting to get out of bed. I
was concerned not only for the discomfort of the individual but also the toll
his discomfort was taking on family. No one should have to witness a loved one
near the end of life suffer if it’s possible for the suffering to be
alleviated. I asked the nurse if she
could administer more medication to relieve the individuals’ discomfort and she
replied that she didn’t have an order to do so. I kindly asked that nurse to communicate
to the attending MD that the medication provided was insufficient for this
individual and request a dose increase or another medication. She did so and
the individual ended up receiving the appropriate amount of medication needed
to pass away peacefully.
Conclusion:
The bottom line is that we all deserve to be comfortable at
the end of life. It often takes an advocate or loved one willing to speak up to
ensure that this gets done. Promoting comfort not only provides dignity and
peace to the dying individual but also priceless peace of mind to the loved
ones involved. I am a passionate, vocal advocate regarding the importance of
ensuring this for families and their loved ones. Any questions please do not
hesitate to contact me.
A simple checklist for making sure your obituary honors and informs.When a loved one has passed away, writing an obituary that honors their life can seem overwhelming. Dont worry - your obituary will honor their life simply by the act of you writing it. You want to celebrate your loved ones life and offer happy and enjoyable memories. You are helping to ease the pain of others simply by telling a story about your loved one.We hope that this checklist will take the stress and pressure off of you and allow you to honor your loved one. Remember, your funeral arranger is an experienced professional and is a valuable resource for writing the obituary.Include basic details about the persons lifeYou dont have to include all of this information, but here are the basics that are often included in an obituary. Choose the elements that are most relevant to your loved one: Age Any familial survivors Education Vocation When the person retired, if relevant Any military affiliations Any volunteer affiliations Include funeral informationFamily and friends often rely on an obituary for information on when and where a persons life will be celebrated, so your obituary will make it very simple for them to get that information (and will save you the hassle of having to answer lots of questions at a time when you would prefer not to be bothered with small details). You can include: Date and time of the funeral Place the funeral is being held Any viewing details Request for donations in lieu of flowers
The thought of public speaking throws many people into a panic. Add to that fear the common discomfort of discussing death, and it's easy to understand why the idea of delivering a eulogy can be disconcerting. If you've been asked to write a eulogy, take heart. This article will help you put your fears in perspective so you can deliver a loving eulogy."Why me?"You were probably asked to deliver a eulogy because of your close relationship to the deceased, and because the family trusts you to honor his or her memory on behalf of family and friends. The family doesn't want to make you feel uncomfortable, foolish or as though your grief is on display. It's an honor they've bestowed upon you. Helping others say goodbye may turn out to be a rewarding experience. Don't worry about making mistakes. A eulogy comes from the heart of the deliverer. I can't see how a mistake could be made as long as it is honest and true."I can't write."Don't let the thought of writing intimidate you. You don't have to be a novelist to move people. Everyone has a story to tell and that's your job as a eulogist. Tell people your story.In the book "A Labor of Love: How to Write a Eulogy," author Garry Schaeffer says a eulogy should convey the feelings and experiences of the person giving the eulogy, and should be written in an informal, conversational tone. Schaeffer dispels the misconceptions that a eulogy should objectively summarize the person's life or speak for all present. Sit down and write from the heart.Eulogists often write about the person's attributes, memories and common times that were shared together. Sometimes they include the deceased's favorite poems, book passages, scripture verses, quotes, expressions, lines from songs or items that were written by the deceased. Whatever is selected, it generally reflects the loved one's lifestyle.These questions should get you thinking: How did you and the deceased become close? Is there a humorous or touching event that represents the essence of your passed loved one? What did you and others love and admire about the deceased? What will you miss most about him or her? Some of the simplest thoughts are deeply touching and easy for those congregated to identify with. For example, "I'll miss her smile," or "I'll never forget the way he crinkled his nose when he laughed," are just as good as "I admired her selflessness.""I can't speak in front of people."It may not be easy, but you can do it. A funeral is one time you'll surely have a kind and empathetic audience. They feel for you and are on your side. You'll only have to speak for five to ten minutes, but your gift will live in the hearts of the deceased's family and friends.If you're worried about choking up or breaking down in the middle of your eulogy, you can take a moment to compose yourself, then carry on, as Schaeffer recommends, or you can have a back up person ready to step in. Give a copy of your eulogy to the minister or funeral director so that person can finish the eulogy if you're unable to continue.Tips Be honest and focus on the person's positive qualities Humor is acceptable if it fits the personality of the deceased. "If you are inclined to be a perfectionist, lower your expectations and just do what you can given the short time-frame and your emotional state," writes Schaeffer in "Labor of Love." Keep it brief. Five to ten minutes is the norm, but it's a good idea to verify that with the minister or funeral director. Leo Saguin recommends interviewing family and friends in his book "How to Write and Deliver a Loving Eulogy." Put the eulogy on paper - at least in outline form. Eulogy or Sharing Time?If you're planning the funeral, you might want to consider "sharing time" as an alternative to a eulogy. In sharing time, the people congregated pass a microphone or take turns standing up to share their thoughts. It's like a lot of mini eulogies and is more spontaneous.Links Offering Examples Mona Simpson, sister to Steve Jobs, delivered a heart wrenching eulogy that was posted in The New York Times on October 30, 2011 - Click here to read it in its entirety. Former British Prime Minister Margaret Thatcher's eulogy for President Ronald Reagan was telecast at his services in 2005 as she remembered her friend. Click here to read it in its entirety. Books Offering Help, Examples and Inspiration Books Offering Help, Examples and Inspiration "The Book of Eulogies: A Collection of Memorial Tributes, Poetry, Essays, and Letters of Condolence" by Phyllis Theroux (editor) "How to Write and Deliver a Loving Eulogy" by Leo Seguin "Final Celebrations: A Guide for Personal and Family Funeral Planning" by Kathleen Sublette and Martin Flagg "In Memoriam: A Practical Guide to Planning a Memorial Service" by Amanda Bennett and Terence B. Foley "My Deepest Sympathies: Meaningful Sentiments for Condolence Notes and Conversations, Plus a Guide to Eulogies" by Florence Isaacs "Remembering Well: Rituals for Celebrating Life and Mourning Death" by Sarah York "Readings for Remembrance: A Collection for Funerals and Memorial Services" by Eleanor C. Munro (introduction) "Remembrances and Celebrations: A Book of Eulogies, Elegies, Letters, and Epitaphs" by Jill Werman Harris (editor)
What makes a funeral service memorable? Most often, it's the words that are spoken and the special people who say them. So when you gather with family members to plan a ceremony to help you celebrate the life of a loved one, it's wise to choose your speakers with care. There are several speaking roles to think about. Choosing the right person for each of these roles is important.Ceremony LeaderYou will need one person to take charge and oversee the ceremony. This person is responsible for starting and finishing the service, performing official duties within the ceremony, and coordinating all the activities in between. This person is called the officiant.If your loved one was involved in a religion, the clergy from his or her church may be the logical choice. If the person who died (the deceased) was not a member of a specific church, you can invite clergy from another church or an officiant with no church connection to perform a religious ceremony.Most clergy will follow an order of service dictated by their religious rules. This typically includes prayers, readings and blessings for the deceased and saddened family members.If a non-religious ceremony seems right, or family members are having trouble choosing the clergy, a professional funeral celebrant may be the solution. A celebrant will work with you to design a fully customized ceremony that can meet a variety of needs. Your funeral director can help arrange for an officiant.Guest Speaker or EulogistAnother important choice is the person or people who will write and deliver a speech a eulogy about the life of the person who has died. The speech is ideally given by someone who knew the person well enough to gather and share memories and highlights of his/her life.Sometimes the choice is obvious within the family. There is often one person who seems to be the unofficial family spokesperson. In other cases, the family needs to look further to find the right person to have the honor. Another family member, a lifelong friend or a trusted co-worker might have the perfect combination for the job a deep knowledge of the person who died and good writing and public speaking abilities. In some cases, the officiant, who may be a priest, minister, or professional celebrant, will give the eulogy.Many families choose to have more than one speaker to cover different aspects of their loved ones' life. One way to do this is to follow the main eulogy with a couple of shorter presentations; perhaps a grandson reading a letter or a daughter reading Mom's favorite poem. In all, no more than 30 minutes should be planned for the Eulogy part of the service.One last word of advice about eulogies: keep in mind that even though a family member may wish to speak at the funeral to help with the healing process, he or she may be too emotionally distressed to speak when the time comes. It's a good idea to have another speaker ready to step in and finish the speech if necessary.Reader(s)Many services include readings from the Bible or other sacred texts. These may be read by clergy or other guests. When planning the service, ask the clergy or celebrant whether guest readers are required or allowed. This could be a welcome honor for a family member or close friend who is not up to the task of writing or presenting a long speech. If you have guest readers, make sure they have the verses ahead of time in order to practice and double check any tricky words.Open MicrophoneIt has become popular to open the floor to allow guests to share additional memories with the group. While this practice can provide more information about the life of the deceased and create a deeper feeling of community, it's not without some risk. Clear time limits should be set and respected. The ceremony leader must be prepared to politely guide participants who speak too long, or the ceremony can start to drag.Final WordsThere are formal and informal rules, rites and traditions involved in almost any funeral or memorial ceremony. Especially if your service occurs in a place of worship, there will be guidelines to respect. Make sure you meet with the selected officiant ahead of time so you understand what to expect and have a chance to discuss any special requests.Most important, remember whose life you are celebrating. Their stated wishes, or your understanding of what they would prefer, should always guide your decisions.
Are you feeling overwhelmed by the complexities and difficulties associated with aging? Have the responsibilities in caring for your loved one become unmanageable? Do you live far away and are unable to provide reliable senior care management? If you answered yes to any of the above questions, you may want to consider hiring an eldercare manager. Hi, my name is Laura. I have been a Registered Nurse (RN) for over 20 years and have witnessed firsthand the challenges and complications that aging presents. It affects not only the aging themselves but also their families and loved ones. Health care is complex, and in this increasingly fragmented and overburdened system, it can be extremely helpful to have a professional oversee all aspects of care. As your eldercare manager, I will comprehensively assess the needs of your loved one and we will work together in establishing a care plan. I will assist you and your family with difficult decisions and help promote healthy communication on issues that are often difficult to address and navigate. An expanded version of my core services are summarized below: MANAGE health care needs, chronic conditions, illnesses, and coordination of careOPTIMIZE health outcomes via my extensive knowledge and experience in the healthcare system. I provide necessary education on chronic diseases and treatment plans, promote collaboration and communication amongst the health care team, ask the right questions of health care personnel, and any other needed activities in order to promote the safety and wellness of my clientsNAVIGATE the complex health system ADVOCATE for individuals to receive high quality care. I do this by such actions as asking the right questions of health care personnel, requesting a referral, second opinion, or further resources when appropriate, and anticipating/ planning for future health care needsTRANSITION clients to appropriate living conditions and proper levels of care. This may be from out of a private home into independent or residential living. It can also entail transition to a skilled nursing facility, assisted living, long term acute care, and hospice. There are many factors and variables to be considered when making these changes, and I provide assistance and support. The above services represent the bulk of my client/family needs. Some other services provided are:Comprehensive health status assessmentAssistance with medication complianceAssessing safety of the home and providing measures to reduce falls Helping clients/ families make difficult health decisions while navigating familydynamics and promoting effective communicationBeing present with client during doctor appointments etc. to ask the rightquestions and help assimilate health informationVisiting and interacting with clients at hospitals and facilities to assess healthstatus, monitor progress, and assist with any needs upon discharge or transfer Contact me today for a free 20-minute consultation!
Are you feeling overwhelmed by the complexities and difficulties associated with aging? Have the responsibilities in caring for your loved one become unmanageable? Do you live far away and are unable to provide reliable senior care management? If you answered yes to any of the above questions, you may want to consider hiring an eldercare manager. Hi, my name is Laura. I have been a Registered Nurse (RN) for over 20 years and have witnessed firsthand the challenges and complications that aging presents. It affects not only the aging themselves but also their families and loved ones. Health care is complex, and in this increasingly fragmented and overburdened system, it can be extremely helpful to have a professional oversee all aspects of care. As your eldercare manager, I will comprehensively assess the needs of your loved one and we will work together in establishing a care plan. I will assist you and your family with difficult decisions and help promote healthy communication on issues that are often difficult to address and navigate. An expanded version of my core services are summarized below: MANAGE health care needs, chronic conditions, illnesses, and coordination of careOPTIMIZE health outcomes via my extensive knowledge and experience in the healthcare system. I provide necessary education on chronic diseases and treatment plans, promote collaboration and communication amongst the health care team, ask the right questions of health care personnel, and any other needed activities in order to promote the safety and wellness of my clientsNAVIGATE the complex health system ADVOCATE for individuals to receive high quality care. I do this by such actions as asking the right questions of health care personnel, requesting a referral, second opinion, or further resources when appropriate, and anticipating/ planning for future health care needsTRANSITION clients to appropriate living conditions and proper levels of care. This may be from out of a private home into independent or residential living. It can also entail transition to a skilled nursing facility, assisted living, long term acute care, and hospice. There are many factors and variables to be considered when making these changes, and I provide assistance and support. The above services represent the bulk of my client/family needs. Some other services provided are:Comprehensive health status assessmentAssistance with medication complianceAssessing safety of the home and providing measures to reduce falls Helping clients/ families make difficult health decisions while navigating familydynamics and promoting effective communicationBeing present with client during doctor appointments etc. to ask the rightquestions and help assimilate health informationVisiting and interacting with clients at hospitals and facilities to assess healthstatus, monitor progress, and assist with any needs upon discharge or transfer Contact me today for a free 20-minute consultation!