Palliative Care – A Top Priority
The need to make quality palliative care services available across the United States is growing. The number of Americans living with serious illnesses increases annually. Palliative care is expert medical care for individuals with critical illnesses focusing on addressing symptom and stress management of a serious illness. Palliative care services are offered concurrently with other medical treatments. The goal of palliative care is improving the quality of life for patients and family members. One does not have to be enrolled in hospice to take advantage of palliative care services.
- There are over 12 Million adults & 400,000 children living with serious illnesses
- 72% of hospitals with greater than 50 beds have palliative care programs
- 66% reduction in symptom distress is reported by palliative care patients
- $3.5 Billion per year savings is possible with nationwide implementation of palliative care programs
Meeting the Need
Hospitals and physician practices are moving towards value-based reimbursement. They are expanding and redesigning palliative care programs. A key component of this process involves improving access to these symptom management services. Healthcare providers are recognizing that palliative care programs are essential to a patient’s wellbeing. They are encouraged to offer palliative care services more aggressively to better meet patient symptom management needs.
Individuals with advanced chronic conditions including heart failure, COPD, dementia, cancer patients most frequently benefit from these services. One should always ask if their particular situation would benefit from palliative care services.
Common symptoms addressed by the palliative care service include shortness of breath, pain management, nausea, vomiting, fatigue, anorexia, depression, and anxiety. Symptom management approaches are customized to meet the patient’s individual needs and modified as the condition changes. The goal is to keep the individual as comfortable as possible.
Where is Palliative Care Provided?
Palliative care services anywhere ever the patient is; in the hospital, skilled nursing facility, nursing home, assisted living or home.
How to Get Palliative Care Services?
Speak to your healthcare provider to determine if you or your loved one’s clinical condition would benefit from palliative care services. Your provider will advise you of locally available palliative care options. Access to palliative care services may be limited by your geographical location, choice of providers may be restricted by your insurance provider. Should you encounter any difficulties, speak to your insurance company’s customer service department to identify a provider.
Speak UpTM to Prevent Falls
The Joint Commission’s (TJC) award-winning Speak Up™ program has a new initiative focusing on fall prevention. Falls happen at home, out and about, in nursing homes and hospitals. Falls happen for a variety of reasons including loss of balance, tripping or slipping. More than one in four adults over 65 years of age falls annually. Falling once doubles the chance of a repeated fall[i]. The Centers for Disease Control and Prevention (CDC) anticipates seven deaths each hour from falls by the year 2030[ii]. The average cost of a fall with injury is estimated at $14,000. That does not take into account the impact on the individual and the fact that unfortunately, not all recoveries are complete. Falls are a real life-changing issue impacting a growing percentage of the population. There are actions that can be taken to decrease the risk of falls and injury.
The senior population is growing and these individuals want to maintain their independence. Women have a 50% greater fall risk than men[iii]. Having an alcoholic drink a week or taking five or more medications and also managing diabetes or osteoporosis increases the risk of falls[iv]. Other medical conditions contributing to an increased fall rate for seniors include angina, stroke, asthma, COPD, chronic kidney disease, arthritis, depression, and dementia[v].
If you or your loved one has had a fall (with or without injury), contact your provider to discuss and determine if any clinical intervention is needed. Do not ignore a fall, it could be a warning sign! Get checked out before a serious life-changing injury happens.
Remove trip and slip hazards, check your footwear, have your vision checked, address any necessary home modifications needs and explore if an automatic fall response system may be appropriate for you or your loved one.
The Joint Commission has a new patient safety campaign Speak UpTM to Prevent Falls that provides information to patients and their families/caregivers on how to prevent falls and become more active in their health care. Check out the video and determine what steps and precautions you need to take to reduce the chance of falling.
Hand-out on a variety of actions to take To Prevent Falls. Print and use as a checklist. Share with a friend. https://www.jointcommission.org/topics/speak_up_to_prevent_falls.aspx
[i] Stevens, J. A., Balesteros, M. F., Rudd, R. A., DeCaro, E., & Adler, G. (2012). Gender differences in seeking care for falls in the aged Medicare population. Am J Prev Med.,43, 59-62.
[i]Centers for Disease Control and Prevention (CDC). Important facts about falls. (n.d.). Retrieved August 8, 2019, from https://www.cdc.gov/homeandrecreationalsafety/falls/adultfalls.html
[iii] Centers for Disease Control and Prevention (CDC). Important facts about falls. (n.d.). Retrieved August 8, 2019, from https://www.cdc.gov/homeandrecreationalsafety/falls/adultfalls.html
[iv] Harvard Health Publishing. (2015, April 15). Why do women fall? Retrieved August 8, 2019, from https://www.health.harvard.edu/womens-health/why-do-women-fall
[v] Paliwal, Y., Slattum, P. W., & Ratliff, S. M. (2017, March 28). Chronic Health Conditions as a Risk Factor for Falls among the Community-Dwelling US Older Adults: A Zero-Inflated Regression Modeling Approach. Retrieved August 8, 2019, from https://www.ncbi.nlm.nih.gov/pubmed/28459060
Speak UpTM About Your Care
The Joint Commission’s (TJC) award-winning Speak Up™ program, launched in 2002 has been used in more than 70 countries. It encourages patients and family members to speak up and be advocates for their healthcare. It is an important element of keeping patients patient safe by encouraging active participation in healthcare services. Important information that is appropriate to use in all interactions with members of the healthcare team.
- Speak up
- Pay attention
- Educate yourself
- Advocates (family members and friends) can help
- Know about your new medicine
- Use a quality health care organization
- Participate in all decisions about your care
These elements are reminders about how to be an active participant in your own healthcare and an advocate for your loved one’s healthcare services. They are practical and based on science. Try them out on your next interaction with a member of the healthcare team.
The short video is a useful step-by-step example and a reminder of how to use SPEAK Up™.
What Was The Most Helpful Surprise?
The Cambridge English Dictionary defines a surprise as “an unexpected event, or the feeling caused by something unexpected happening.” Often the experiences of caregivers more closely match the Merriam-Webster definition of a surprise, “an attack made without warning.” As a caregiver, too often the focus is on the unanticipated crisis or the unexpected decline of our loved one. At times, the attack without warning is the daily caregiving ritual.
The caregiver is the project manager! The individual who has taken on the role of keeping the home going, tending to the loved ones physical and emotional needs, managing medications, treatments and supplies, paying the bills, doing the wash, and all the other unglamorous activities that must get done. The stress a caregiver endures while caregiving for a loved one has long term physical effects. As family and friends of caregivers, there are specific things that you can do to bring an unexpected smile, and relieve some of the caregiving stress.
The “Polite” Offer
Too often caregivers are asked: “What can I do to help?” Sometimes it is a genuine offer and other times it is perfunctory one; similar to “Let’s get together for lunch.” The lunch meeting never actually takes place since it was a “nice and hollow” gesture. Caregivers have too many decisions to make and it is not always easy to stop and run through the “wish list” and come up with an item that matches what the requestor likes or is able to do.
Seasoned caregivers may have a task or laundry list for just such questions, it may resemble: Please help with the following:
- Pick up the following from the supermarket
- Take out the trash cans on garbage day
- Mow the lawn
- Take the car for an oil change
- Fold a load of wash
- Make a meatloaf (or another much-desired entrée)
- Sit with my loved one while I go to the hairdresser
The Unexpected Surprise
I often ask caregivers what was an unexpected and welcomed surprise that made a difference for them. The overwhelming majority of responses related to not being “forgotten” by friends and family. Despite not being able to physically participate in their usual social activities, knowing that someone genuinely cares about them, and took the time to express their thoughts made the difference. Some caregiver responses included: getting a greeting card regularly, finding a meal or flowers at their doorstep. The fact that someone went out of their way to do that “act of assistance” without being asked made the difference.
Caregivers, please share “What was the most helpful surprise” that someone did for you. Friends and family of caregivers, take note and see how you can give a caregiver a wonderful and much-needed surprise.
What Made Me Smile Today?
Opportunities to smile while caregiving tend to be few and far between! Often, we focus most on what is not going well! The decline in our loved one’s status is easy to see. We can quickly list the things that our special person can no longer perform or enjoy. The effects of chronic illness and the decline in status are heartbreaking. Your loved one may experience: not being able to walk, losing bowel and /or bladder control, unable to recognize family members and friends, forgetting important information, no longer enjoys activities, and the list goes on.
Changing the focus for the caregiver is not easy; it is a bit like “Is the glass half full or half empty?” Should the caregiver focus on all the challenges and decline in their loved one’s status or focus on moments of joy and levity? Caregiver “survival” is critical if that special person is going to survive, and then thrive, after the caregiving role has been completed. Smiling is a basic cross-functional form of expression a way to connect when words cannot. The act of smiling has health benefits! Smiling improves mood, may ease anxiety and depression by releasing endorphins, lowers blood pressure, boosts the immune system and can reduce pain. People who smile impact those around them in a positive way, it’s contagious. There is a whole body of science relating to the health benefits of smiling.
How To Smile While Caregiving?
Finding a smile or two in the caregiving process is not a reflection on the loved one, rather the situation and the funny things that may be said, the unexpected joke or situationally funny remark. Unintentional antics ease the tension for both the caregiver and loved one, if they are able to appreciate the situation. For some, giving funny names to parts of the day or tasks to be performed can lighten the mood and set the stage for a bit more levity. Respecting the loved one is always the first priority. Hold on to the humorous moments they are sustaining especially when times are trying. My mom couldn’t remember the name of our local grocery store, Harris Teeter’s, so she gave it the name Teeter-Totter, which has stuck with us. It brings a smile to me and my husband whenever we say it.
- Smile as you wake up, greet others with a smile
- Focus on the positive
- Keep a notebook of funny things and wonderful surprises that happened while caregiving. When times are tough, go back and reflect on the happier time
- Find joy in the little things. Focus on something that went well during the day; it could have always been worse!
- Note something that you are thankful for
- Start your morning or end your day by looking at the comics
- Sign up for a “joke of the day”
- Watch a funny movie
- Connect with others, be sure to ask if they had something funny or unusual happen in their day
- Find the energy and perform a small act of kindness for someone else, it will come back in spades
- Be kind to yourself; recognize that you are doing a difficult and stressful job. Eat well, stay hydrated, have a treat now and then, do something nice for yourself, sing a funny song, take a few minutes to listen to music, read or do whatever brings you joy and smiles
Bam! – You Are Now A Healthcare Surrogate
Your loved one or friend has named you as their healthcare surrogate; the individual who will authorize medical care and treatment, and make all necessary healthcare decisions should the loved one become incapacitated due to illness. This role comes with extensive responsibilities, to ensure that you are acting in accordance with the individual’s wishes and in their best interests. You need to think not of your wishes, but what your loved one would want. If you have any reservations or concerns about performing the role, the reservations must be addressed promptly. Your loved one must have peace of mind knowing that whomever they appoint as their healthcare surrogate will act in their best interest, and do so with no reservations.
It’s Not About You
It’s not about the healthcare surrogate; it’s all about ensuring the best interests for your loved one. Always try to look at things through your loved one’s eyes. Don’t just do what you would do if you had this illness or condition. Don’t let your distress about what is happening with your loved one result in you tell the doctors to do something that you know your loved one would not want.
Think about their medical condition, and how they would want to be treated. Hopefully, you have discussed their wishes and preferences before a crisis situation surfaces, so you already know what are your loved one’s preferences.
Realize that there may be another representative appointed to address the non-healthcare and financial interests of the loved one. Critically consider if you can work collaboratively as healthcare decision maker with the other individual named to protect the financial welfare of the loved one. A disservice will be done to the loved one when the healthcare and financial surrogates cannot collaboratively ensure that the loved one’s wishes are followed.
Be Prepared For The Role
At the time of being named as a healthcare surrogate, you need to know your loved one’s medical status.
- Discussed your loved one’s wishes and have a clear understanding of their end-of-life preferences
- Have a copy of the Healthcare Surrogate form
- Named on HIPAA Privacy Notices that the loved one has completed at each of their medical providers
- Does the person have any ongoing medical issues, such as chronic conditions?
- Does the person have any allergies (to medicines or to other things)?
- Is the person currently taking any medicines or receiving any medical treatments? What medicines or treatments and for what purposes?
- Are there any drugs or medical treatments that the loved one would prefer not to receive, and why?
- Meet/get to know the financial surrogate if applicable. Exchange contact information
Many times the healthcare surrogate assumes the role to address end-of-life care. This typically happens when there is a crisis situation and quick decision making is needed. This is the time when knowing and following the loved one’s advanced directive and planning wishes takes center stage.
- Does your loved one care more about living as long as possible (even if that might mean some physical discomfort), or being as comfortable as possible (even if that might mean a shorter life)?
- Does your loved one want to be at home at the end-of-life, or would the loved one prefer to be in a hospital or professional care setting?
- Does your loved one have religious or spiritual values that will affect the types of care or treatments he or she would like to receive?
- Are there specific life-support treatments that your loved one knows he or she would like to receive or would not like to receive?
- Would your loved one like to have a palliative care team or hospice team care for him or her at the end of life?
- Are there other wishes that should be observed as your loved one nears the end-of-life, such as calling a religious leader to come visit the person, having certain music playing, or having certain friends or family members in the room?
The Job Description
Key responsibilities and duties of the healthcare surrogate (there is always something else you may have to address). There may be some modifications to the role based on State statutes; the following is a general guide:
- Make decisions that are in accordance with your loved one’s wishes including religious and moral beliefs, if those wishes are known
- Make decisions based on the patient’s best interests, if the patient’s wishes are not known
- Diligently consult with physicians and other health care providers regarding medical care, including medical tests, medicine, surgery or end-of-life care
- Provide informed consent on in matters of medical intervention
- Apply for Medicare, Medicaid, or other programs or insurance benefits on your loved one’s behalf to help pay the cost of health care
- Manage the admittance to or transfer from health care facilities, including hospitalization, rehabilitation center, nursing home, home health care or hospice
- Authorize access to your loved one’s medical records for healthcare decision making
- Authorize release medical records to third parties
- Authorize decisions regarding autopsy, organ and tissue donation
- Request or decline life-support treatments
- Choices about pain management, including authorizing or refusing certain medication or procedures
- The option to take legal action on the person’s behalf in order to advocate for his or her health care rights and wishes
Your Spokesperson – Your Champion
Who will speak for you?
Designating someone to serve as your representative to make healthcare decisions for you, if you are unable to make them yourself, is an important activity. The designation of this role is a key component of Advance Care Planning (ACP). Determining who that champion of your medical decision making should be when you are incapacitated requires some thought. Often a spouse or partner is the obvious choice. Hopefully, these individuals know your wishes and will do whatever it takes so that your wishes and interests about medical care, treatment, or no treatment will be honored. In the absence of a spouse or partner, consider naming your adult child or a trusted friend for the task. Remember, whomever you choose to serve as your healthcare surrogate/proxy, they will be an integral part of your circle-of-care.
When no one can speak for you…
In the absence of a named healthcare surrogates, healthcare power of attorney, or healthcare proxy (similarly known documents) most states have a hierarchy of who will take the responsibility for making your healthcare decisions. A guardian may be appointed by the Courts in the absence of a family member or trusted friend who knows your wishes. A guardian may also be appointed in the event that there are concerns in how the healthcare surrogate is making decisions relating to your healthcare needs. Typical situations where guardians are named include the healthcare surrogate not following your wishes or making decisions that are not in your medical best interest.
A healthcare surrogate has been identified
Once you have identified the individual who will be serving as your medical champion, verify that they are willing and able to take on this responsibility. Once you have their confirmation that they are willing to take on the role, it is necessary to complete the appropriate forms designating your wishes. Healthcare surrogate/proxy forms can be obtained free from your physician, hospital, State Agencies, or may be obtained from an attorney as part of your Advance Care Planning packet for a fee. Most states require that the forms be notarized.
What to do once the surrogate has been identified:
- Inform the individual that they have been named and get their agreement to be the surrogate
- Provide a copy of the form to the healthcare surrogate/proxy so that they can present it in an emergency to help in ensuring your wishes are respected
- Provide the healthcare surrogate/proxy’s name and the individual’s contact information to all your healthcare providers
- Add the Healthcare surrogate/proxy to Privacy Notices that you are asked to complete and acknowledge with medical providers. Without this information, they may be unable to communicate your medical condition and information on your behalf
- Keep that healthcare surrogate/proxy’s name and contact information with you in your wallet and provide with any medical reports or information
- Keep a copy of the Healthcare surrogate/proxy form readily available; do not place it in a safe or bank vault that might not be accessed in an emergency. The form must be handy in the event of a medical emergency. Some individuals keep a copy on their refrigerator, a common location that EMS will check for such documents
- Upload your healthcare surrogate/proxy document to your state’s registry (if available)
The healthcare surrogate can be changed
The designation of a healthcare surrogate/proxy may be changed. This can occur if you feel that the initially appointed individual is not able to act in your best interest, or is no longer able to fulfill the role. If that is the case, you will need to thoughtfully identify a new healthcare surrogate/proxy, complete new a new form, and diligently go through the steps with your providers to update the surrogate designation and privacy forms. The outdated contact information and forms should be removed from wallets and replaced with the new information.
A future blog post will address the role of the healthcare surrogate.
Typically when hearing the phrase “Unfinished Business”, the first thought is that of a work or household task that has not been completed. You may have been called away, distracted, or interrupted and did not have the opportunity to complete the job. Yet there is another meaning to the phrase “Unfinished Business” that goes beyond tending to the outstanding tasks (incomplete personal and work projects) and encompasses the spiritual distress associated with relationships, unresolved matters from the past, and may not be religious in nature.
As an individual’s physical status declines, they have lower energy and concentration levels, and may not be able to focus on managing their outstanding issues. This makes addressing “Unfinished Business” a priority for family and caregivers who work with those in declining health.
An approach to addressing “Unfinished Business” is by asking your loved one:
- Is your “Unfinished Business” going to be a surprise or a burden to someone you love?
- If you had an opportunity to say something to your family member, what would it be?
- How are your spirits holding up through all of this?
- What is like to be you right now?
Your loved one may ask you for guidance and assistance with some of their concerns.
Depending on the circumstances that have led to the individual’s physical decline, there are various types of questions that people ask themselves and others, as they realize their time is limited. In many cases, there are no real answers, yet these questions drive home the point that opportunities should be provided for the loved one to put closure on their “Unfinished Business.”
Loved Ones Questions
Questions your loved one may ask that provide some insight as to concerns about their current status or legacy:
- Meaning: How do I explain this to my kids?
- Purpose: I feel so useless.
- Suffering: Why is this happening?
- Connection/Legacy: Will my kids remember me?
- Permanence: Will I live on in some way?
- Coping: How am I going to get through this?
As a family member, friend, or caregiver you need to be prepared for such questions and provide the loved one an opportunity to share their thoughts and feelings without being judged. Avoid the temptation to dismiss having this emotionally charged conversation; remember that it is not about you, it is about the loved one having the opportunity to put closure on their issues and concerns. Additional support and assistance may be obtained through clergy, hospice staff, social workers, nurses and individuals that the loved one trusts and values.
Advanced Care Planning- The Gift of Love
National Healthcare Decision Day
April 16 is National Healthcare Decision Day is an initiative to encourage individuals to express their wishes regarding healthcare. Sharing your wishes relating to end-of-life, should not take place during a crisis. Additionally, the discussion is not reserved for those in retirement.
A medical crisis could leave you unable to make your own healthcare decisions. The discussion should take place early in life. Your views relating to end-of-life care and preferences are shaped by many factors including culture, religion, ethnicity, educational level, beliefs, family customs, income, environment and exposure to those who are chronically ill or dying.
The importance of younger adults considering their end-of-life wishes cannot be understated. Younger adults have a lot at stake. If stricken by serious disease or accident, medical technology may keep them “alive” for decades. Some of the most well-known “right to die” cases resulted from young individuals, incapacitated by tragic accident or illnesses and maintained on life support.
Advance Care Planning
Advance Care Planning (ACP) is a framework to help you think about the various plan components, discuss and decide what is right for you, document and share your wishes. Then periodically review your wishes to determine if any changes need to be made. You should determine who will be your Healthcare Champion (Surrogate), the individual who respects your wishes and will speak on your behalf if you are unable to do so. Empower this person by completing a Durable Power of Attorney for Healthcare Decisions also known as a Healthcare Proxy document.
When you document your end-of-life wishes, it is vital that you share them with your surrogate and loved ones. Your surrogate should have the opportunity to seek clarification from you and not be surprised at a time of crisis by your wishes. This provides you the chance to validate that your wishes will be respected.
Advance Directive Considerations
When thinking about your Advance Directive there are several important questions to consider:
- What is important to you?
- What do you want to happen?
- What do you want not to happen?
- Who would speak for you?
There are wonderful free resources to assist you in opening the discussion with loved ones, and helping you to define your wishes. Many of these resources are also available in a number of foreign languages.
Updating and Ensuring Availability of your Advance Directive
Your Advance Directives can always be modified. It is a good practice to review your wishes every year or so, and when there is a major change in health status. Updated documents need to be shared with the Healthcare Champion (Surrogate), your physician (medical team), and uploaded to a registry if available in your state. Avoid placing such documents in a safe deposit box as they will not be accessible if the bank is closed. Consider uploading to your smartphone for back up.
The Caregiver Match
Caregiving is like dating
I often share that finding the right caregiver is like dating. There needs to be a comfortable connection between the loved one and the caregiver. The circle-of-care members (family and significant others) must also feel at ease with the hired caregiver. Getting to that point can be painful and frustrating; just know that there is a caregiver match for every loved one!
Finding the right match involves the “personality” component and a “skills” portion. However, addressing each of the caregiver components for a match is critical for a safe, respectful and lasting caregiving relationship. If there are questions or concerns relating to a caregiver, never settle; don’t make do with a hired caregiver. There must be both a personality and skills match. Above all, you always have caregiving options (caregivers may be hard to find at times). As a member of the circle of care, you must be assertive and protective of your loved one. Remember, not all caregivers are the same.
For some loved ones, addressing the personality component may be more difficult. Consider the highly educated individual with lots of professional affiliations and hobbies who may be physically limited, yet is used to very stimulating discussion and is unable to re-channel the energy and thoughts in other ways. Can the caregiver adapt their individual style to listen and ask questions, or do they show disinterest and disregard for your loved one?
There are those caregivers that are more comfortable tending to the mechanical care aspects and prefer limited verbal communication with the loved one. On the flip side, there are those caregivers with the “warm and fuzzy” personality who can engage the loved one, however, they are not as focused on the caregiving mechanics. The challenge is finding the right balance of engagement and caregiving mechanics. Find the individual who has both a head and heart while caring for your loved one.
- Appearance – Uniform: was the caregiver working elsewhere (in the same uniform) prior to coming to care for your loved one? Was that individual working at a daycare center during flu season or with others who may have an illness that could be spread? Safety of the caregiver is paramount. Paid caregiving is done with closed toe shoes for the caregiver’s protection. Flip-flops or open toe shoes should raise
- Long acrylic nails – The issues of infection control and acrylic nails is well documented. Long nails and fragile skin do not mix. The risk of skin tears is real, and skin tears often come about when holding or repositioning a loved one. You want to minimize injury from nails or jewelry that could unintentionally harm your loved one.
- Correct use of equipment – Knowing how to use the medical equipment correctly seems basic, yet there are many different models of the devices and supplies used to care for a loved one (glucose monitors/pumps, pressure mattresses, CPAP, wheelchairs, mechanical and electrical beds, etc.) Is your caregiver experienced with the medical equipment, or can they receive training?
- Getting up and moving – Falls are a common cause of injury to loved ones as they decline. Often the loved one does not realize or want to recognize, their declining physical status. The caregiver needs to be proactive in responding to that change in status. Often gait belts are used as a safety precaution. If the item has been prescribed, it is imperative that the caregiver ensures its use. Concerning comments made by a caregiver about to walk a loved one that should raise concern include: “I have him” or “I can catch her” pose a risk to both the loved one and the caregiver.
- Follows instructions – It is important that the caregiver follows the plan of care. If the caregiver raises concerns or questions about the loved one’s status, those concerns need to be addressed and the care plan updated. Unfortunately, there are some caregivers who believe that they know what is always best for the loved one and disregard the professional recommendations to the contrary. Situations that should raise a concern, include giving the loved one food they may want, but are unable to tolerate or eat safely, getting the loved one out of bed or walking them when the loved one truly does not have the physical strength and ability. These types of situations place your loved one at risk.
- Receptiveness – Be aware of how the caregiver responds to simple requests and sharing of the loved one’s preferences. When resistance to care plan modifications are expressed or observed, explore the reasons further, and determine if this individual can continue as a caregiver. Be sure the caregiver feels valued and appreciated, and thanked for the activities performed. Remember that the goal is ensuring that your loved one’s needs are well taken care of. If the “I know better than you” attitude is consistently displayed, this individual may not be the right caregiver for your loved one.
- Shares updates – The majority of caregivers are very good about sharing observations and changes in the loved one’s status. That comes from building a relationship. This is a vital practice to promote and encourage. Often the caregiver will clue you into issues and concerns that a loved one may have and not be sure how to address it with you. If your caregiver is not sharing, ask for updates and let the caregiver know that you value their opinion and insights, and would like that communication.
Respecting the preferences of the loved one, and asserting for their needs is not easy. Don’t be shy. If you don’t do it, who will? Loved ones are vulnerable, their welfare and safety must be the primary goal and focus.
#palliativecare, #palliative, #hpm, #homehealth, #compassion, #eol, #caregiving
Simplifying Complex Care for Older Adults
Mary Tinetti, MD is the Chief of Geriatrics at Yale School of Medicine and Yale-New Haven Hospital, and co-chair of the advisory group for Institute for Healthcare Improvement (IHI’s) Age-Friendly Health Systems. At its core, an Age-Friendly Health System looks to optimize value for your loved one, the family, caregivers, and the healthcare system. An Age-Friendly Health System is looking for a win-win solution for everyone involved. Dr. Tinetti identifies the keys to providing the best care possible for older adults.
As individuals age, they amass more clinical conditions that become more complex over time. Seniors are individuals and it is important to remember each person’s outcomes, values, and desires are unique; they cannot be generalized. The healthcare team must recognize this individuality, and respond to the person’s specific needs, interests and priorities. When providers generalize or don’t take into account the variability of seniors, then there may be unintended care consequences.
The “4Ms” is a part of an age-friendly approach focusing on improving the care that is complex and helping to make it more manageable. Regardless of the condition, the number of functional issues, culture, ethnicity or religious background, the “4Ms” are applicable.
- What Matters — Acknowledges that older adults vary in what matters most to them about their health, and their health care
- Medication – The number, types, availability/access, tolerance
- Mentation — Mental activity. This includes the “three Ds” of the 4Ms (depression, dementia, and delirium)
- Mobility – How well is the individual able to get around
It is important for clinicians to examine each of these areas (What Matters, Medication, Mentation, and Mobility) collectively for each individual at every interaction.
These “4Ms” are intricate issues that are related to each other. They provide insight into some of the challenges associated with managing complex conditions. Common chronic conditions include Parkinson’s, dementia, diabetes, heart failure, and renal disease. When multiple serious chronic conditions coexist, the intricacies of clinical management become more challenging. It is important to remember that each individual is unique, and each person responds in their own special way.
Share with your provider
- What’s important to you from a health perspective, how you “like” to live, needs, what you value, and your Advance Directive wishes
- All medications that are taken; including over the counter, vitamins, supplements, creams, and prescriptions from other providers. Do not assume that one provider has a complete list of all the medications that are being taken
- Feelings, being sad, “feeling blue”, forgetfulness and any strange new or unusual emotions
- Any changes in the ability to “move”, includes changes in walking, being able to get out of bed, chair or tub, climb stairs, change in range of motion or ability to pick up items
Individuals and caregivers should remember the IHI’s Ask Me 3: Good Questions for Your Good Health that should be asked during each provider visit.
- What is my main problem?
- What do I need to do?
- Why is it important for me to do this?
The Ask Me 3 questions help you to focus on the important issues that are affecting your condition at a particular time. These questions become a nice introduction to the “4Ms” that providers are beginning to utilize in care management. You are encouraged to use the “4M” as a means of reminding the provider of your “uniqueness,” and desire for the best possible care. Open the provider discussion to the “4Ms” if the provider has not done so, as they tie in nicely with any treatment, or medication change made. These questions and approach encourage and assist in improving communication with the provider. They are a framework for better understanding of the proposed treatment or medication.
Insensitivity to Caregivers Stings
Caregiving is often a 24/7 role, and as the loved one declines the caregiving responsibilities increase. The physical and emotional toll of watching a loved one decline coupled with the increase in caregiving demands, lack of sleep, change in routine, and added responsibilities can result in a very stressed caregiver with fragile emotions. Some caregivers experience “role reversal”; activities and responsibilities that were once performed by the loved one now fall to the caregiver to address, in addition to all the other caregiving duties. There are many individuals who have never cared for a chronically ill person or a loved one who is experiencing memory loss, thus increasing physical limitations and have no appreciation for what goes into caregiving.
The Caregiving Reality
For many, caregiving activities involve some degree of bathing, toileting, grooming, feeding, assisting with walking or moving into a chair, meal preparation, medication administration, dressing changes, therapies, and keeping the loved one safe. In the event that the loved one does not sleep or requires assistance with repositioning, toileting or medications at night, that results in the caregiver is not getting sufficient rest, therefore, putting their health at risk. Beyond the physical activities associated with caregiving, the caregiver still must keep the household going. Additionally, the tasks of shopping, laundry, bill paying, house cleaning and maintenance, and potentially working, can all represent functions that caregivers must address and worry about.
Although friends and family are well-meaning, they don’t always have a behind the scenes appreciation for what the caregiver is doing or experiencing. It is important to realize that remarks or questions can be interpreted by the caregiver as inappropriate, rude, demeaning, stupid, devaluing or insensitive. When stressed caregivers are tired and frustrated, they often experience heightened sensitivity to criticism. Individuals who do not know what to say, or don’t think through the implications of their remarks are unaware of the lasting impact of what they have said to a caregiver.
Particularly stinging are comments relating to the mood of the caregiver such as “cheer-up”, “Why are you struggling?”, “you look tired/worn out”, “you should not have to provide the care”, “put your loved one in a facility”, “your loved one does not even know/appreciate what you are doing for them” depict the type of comments that leave caregivers upset and frustrated.
To be supportive of caregivers
- Acknowledge what they are doing
- Acknowledge that the role is stressful
- Make a reference to something they are doing that is making a difference for a loved one
- Offer words of encouragement such as:
- What you are doing is important
- You are making a difference for your loved one
- Your loved one is lucky to have you
- You have a very special relationship with your loved one
- I admire what you are doing
- I support the effort you are making for your loved one
- I would be honored/lucky to be cared for like you are doing
- Smile & give a hug
- Offer specific assistance – Bring a meal, do a chore, run an errand to lighten the load of the caregiver
- Making judgements about their caregiving role
- Criticizing what they are doing
- Talking down or treat the caregiver or loved one as a child
- Making the conversation about the non-caregiver and their experiences
- Referencing a future reward for their caregiving responsibilities
- Comparing caregiving experiences, each is unique yet there are commonalities
Consequently, caregivers who are at the receiving end of insensitive remarks have the choice as to how they respond. There may be times that ignoring or not responding to the comment is best, hence the individual runs the risk of focusing or dwelling on the insensitive remark and having it impact the relationship. Responding calmly is an art. Sharing that the comment was hurtful or insensitive, along with the feeling evoked may help avoid future hurtful comments. There may be individuals the caregiver wants to engage in addressing the specifics of a comment that could result in brainstorming or specific requests for assistance and support.
If you know a caregiver, go out of your way to do something special for them, lighten the burden that they are carrying. You will both feel better after your act of kindness has been received. Check out Home Hospice Navigation: The Caregivers Guide for additional suggestions and resources.
End of Year Personal Report Card
As the year draws to an end, this is a time to review the year from a variety of perspectives. Often, an individual’s financial health is the one area that gets the most focus. Evaluating the status of investments, retirement contributions and making last-minute donations to charitable organizations are the top areas of attention. Some individuals take advantage of funds left in their Flexible Spending Account (FSA) and get needed dental work, glasses or other medical services that have been delayed.
Financial health, and physical assessments and treatments, are not the only areas to address. A key area is a review of your Advance Directive paperwork, this is crucial for individuals of all ages as serious accidents or illness can occur at any time of life. Consider:
- Do you have an Advance Directive?
- Does your Living Will reflect your current wishes?
- Have you had a health crisis since outlining your wishes and your forms need modifications?
- Are your choices of Healthcare Surrogate and Financial Power of Attorney still appropriate?
- Are those individuals still able to carry out your wishes?
- Are any home modifications needed to remain safe, and age in place?
- Do you need to purchase Long Term Care Insurance?
- Do you need to self-fund for long term care needs?
- Is your Last Will & Testament up to date and reflect your current wishes?
Resources for Advance Directives include The Five Wishes, Death Over Dinner and The Conversation Project. The holidays are a great time to share your wishes with family, allay their concerns and address any questions that surface. Having your family around to hear from you directly what your end-of-life wishes are, and how you want to be cared for when you are unable to share your care wishes, is a gift. It often is a very hard gift to share, due to the emotions associated with recognizing that you are sharing how you want to live while dying. Once shared, you will experience peace of mind and know if there are any issues between family members that need to be resolved.
Thanksgiving has become the time to show appreciation and celebration of family, health and good fortune. Expressing gratitude when caregiving, can be very challenging, especially as a loved one is declining physically and mentally. Too often we become focused on what has been lost physically, mentally and emotionally; that we fail to recognize that there are still things that we should be thankful and grateful for. Being grateful refocuses us, on the positives we encounter. At times we fail to recognize the simple gestures extended to us, it may be a friend who calls or sends regular greeting cards, someone who brings a meal or assists with a chore or task that we are unable to perform. The acts of “goodness” and kindness, expressed towards us are humbling; they stop us forcing us to acknowledge that we have “forgotten” to appreciate the goodness around us. On this Thanksgiving take the opportunity to reflect on all that is good and kind around you, reach out to someone, return the kindness and acknowledge them for what they mean or do for you. May this be a time of blessings for you and your loved one.
November is known as Palliative Care & Hospice Care month. A time to recognize the professionals dedicated to symptom management and end-of-life care. This is also an important time for individuals of all ages to discuss their end-of-life preferences and wishes with loved ones and their physician. Take the time to complete or update Advance Directive forms. Consider sharing these preferences at Thanksgiving with family and friends, providing the opportunity to stress your desires and address concerns.
Resources to assist you in the discussion process include Conversation Starter Kit a resource that is available in multiple languages, includes a version for those with Alzheimer’s/dementia and those with a seriously ill child. These resources are from the Institute for Healthcare Improvement (IHI). Another valuable resource is Death Over Dinner that helps you plan a dinner party to articulate end-of-life preferences. “The dinner table is the most forgiving place for difficult conversation. The ritual of breaking bread creates warmth and connection, and puts us in touch with our humanity.” The site has a number of versions including an Australian, Jewish and Brazilian edition.
#deathdinners #palliativecare #palliative #hpm #homehealth #compassion #caregiving #familycaregiver #joyincaregiving #hospicecaregiving #caregivertips #caringforfamily #HomeHospiceNavigation #HomeHospiceCaregiving #HomeCare #VNAA #IHI #DeathOverDinner
Coming to the realization that additional caregiving assistance is needed may be obvious to some and very challenging for others to realize. The need for more caregiving support affirms that the current caregiving plan is not meeting the changing needs of the care recipient. Some view this need for additional assistance as a very difficult and painful realization that they are not able to fulfill all the care needs of the loved one.
How to find a caregiver? Just like dating, ask for a referral from a trusted friend, colleague, spiritual advisor and anyone you come in contact with. Caregivers are typically not free, so be sure you have a realistic budget and recognize that as an individual declines, usually additional caregiving hours are needed. There are “dating services” also known as non-medical homecare agencies and registries to assist in the caregiver identification process. Be sure to ask about the background checks and screening processes used. No matter how you find the “professional” caregiver, they need to be the “right” match for the care recipient and the circle-of-care at the bedside. Whenever possible, speak directly with someone who has hired this individual to gain first-hand insight about them and their abilities.
Try to meet the individual prior to the initial caregiving session if possible. This is the time to determine if the potential caregiver is the “right fit” for the care recipient. What is your “gut” reaction when you meet the individual? Do you have reservations or concerns? Consider, personality, temperament, willingness for the assignment, physical ability to meet and perform the care needs, availability to provide the hours needed (do they have other individuals for whom they provide care and you will need multiple individuals to cover the hours?) Can the caregiver easily communicate, and able to understand the wishes of the care recipient? Can the care recipient easily follow the instructions of the caregiver? Be sensitive to communication challenges. Are there cultural, ethnic or religious aspects that need to be clarified? If your loved one has special needs can the caregiver meet them? Does the care recipient have certain preferences, and can the caregiver abide by them?
As with dating, sometimes there is a mismatch, be sure to have an exit strategy with a corresponding back up plan. Sometimes “blind dates” work, and other times they do not. Be realistic in your expectations, address what is important to you and the care recipient and also take the time to learn about the caregiver, establish guidelines and expectations up front and together to ensure minimal disruptions to the care recipient.
Financial implications associated with hiring a caregiver will be discussed in a future post.
#palliativecare, #palliative, #hpm, #homehealth, #compassion, #eol, #caregiving
The fitness for caregiving duty question should not be taken lightly. Is the caregiver Willing, Able & Available needs to be asked and responses evaluated continuously during the caregiving journey ensuring the caregiver ability to meet the demands of the role, and that the loved one’s care needs are being safely met. Typically, when a loved one has physical or mental status change there will be a corresponding change in caregiving needs. As the loved one’s condition declines, the care needs typically increase. The additional care requirements mean more frequent and complex caregiving interactions that can be emotionally and physically draining. Caregiving assistance that may have been periodic or supportive in nature shifts to being more intensive. Intensive caregiving requirements go beyond some assistance with bathing and grooming, toileting, feeding, dressing, transferring and walking to having to meet all of those needs with extra assistance. This corresponds to spending more time and energy on the various caregiving functions while continuing to manage medications and keeping the loved one comfortable.
The questions that caregivers and their support system need to continuously evaluate are:
- Is the caregiver able to meet the care needs of the loved one? That is, can they physically and mentally complete the caregiving tasks safely? If the recipient of care is physically taller and heavier than the caregiver there will be physical constraints, including limitations in the ability to lift, turn, safely walk and provide the assistance with activities of daily living. Is the caregiver able to cope with the demands of caregiving?
- Is the caregiver willing to meet the care needs of the loved one? That is, does the caregiver feel comfortable and willing to assume these additional tasks that may include emptying bedpans, dealing with vomit, handling additional bodily fluids, managing medical equipment and supplies?
- Is the caregiver available to meet the care needs of the loved one? That is, can the caregiver be present to carry out the necessary care? Does the caregiver have conflicting responsibilities such as work, child care or other obligations that will impact their ability to meet the needs of the loved one?
If the answers to these questions is “no” that is a clear indication that additional caregiving support is needed. This is the time that the members of the circle-of-care, needs to reevaluate the caregiving plan and make modifications to meet the recipient’s needs.
Don’t forget that caregivers need to opportunity to “recharge” and take care of their own physical and emotional needs before meeting the needs of others. Friends of caregivers need to help the caregiver get the required time away for a bit of relaxation, a tasty meal, run an errand or read a book. Remind the caregiver of the instructions given on a plane, that when the oxygen masks come down, always put on your own mask before assisting others. Evaluate your caregiver situation for being able, willing and available to perform the needed care tasks.
#palliativecare, #palliative, #hpm, #homehealth, #compassion