End-of-life preparation is a sobering subject to tackle. Nobody wants to send their loved ones away to a nursing home or assign them a caregiver, but it’s often necessary for their safety and well-being. If your loved one is nearing end-of-life, you will need to address many moving parts, including determining where he/she will live, and what types of care will be needed. And you will need to discuss the topic with your loved one.
Below find issues to consider when making end-of-life decisions for your loved one so he/she can get the attention and treatment needed and deserved. No matter what decisions are made, you must provide your loved one with ongoing support and assurance.
Have the difficult conversation with your loved one.
Where do you begin? How can you breach the subject with an equally realistic and sensitive approach? The Hospice Foundation of America has many constructive questions to help you break the ice. Here are some to consider:
- What do you value most about your life?
- How do you feel about an extended hospitalization or extended time in a nursing home?
- Would you want to be pain-free, even if it meant trading comfort for wakefulness or alertness?
- Who do you want around you when you are dying?
- If applicable – do you still want to pursue every possible treatment, realizing that some could negatively affect your quality of life?
- Would you imagine wanting to stop curative efforts if they were unsuccessful?
If your loved one answers these questions honestly, you will get a good idea of their feelings about next steps.
Beware that your loved one may become hostile while having these difficult conversations. Uncharacteristic anger is a common coping mechanism for the elderly and people with terminal illnesses. You must be prepared for these outbursts and not take them personally.
Should you document these conversations?
Documenting or recording your conversations is important so doctors can judge your loved one’s reactions and assess their priorities. Additionally, some hospice agencies might add this information to the patient’s medical file for future reference.
Most importantly, documentation helps you fully grasp your loved one’s struggles. You need to imagine yourself in their position to understand their physical and emotional pain. This kind of empathy is a crucial part of your end-of-life preparations.
Create a plan for end-of-life care.
The conversation about end-of-life care is perhaps the most difficult part of the process, but it’s also the most important. This talk isn’t a one-time thing. It’s an ongoing, open discussion that can change if a new health problem arises or if other factors change.
If your loved one is mentally capable, his/her input should be taken seriously when putting together a care plan, even if you don’t agree with their choices. For instance, he/she may want to stop all curative treatments (such as chemotherapy), but you may want him/her to continue in hopes he/she could improve.
However, if your loved one is emotionally or cognitively unable to actively participate in these decisions, you will likely have to make end-of-life decisions entirely on his/her behalf. If so, provide a HIPAA release form to each of your loved one’s doctors so they can speak freely to you. To get a HIPAA release form, look online (for your loved one’s state) or ask your doctor. Additionally, get advance directives so you can make medical decisions on his/her behalf.
Don’t be afraid to press the doctor for an honest prognosis. Get a realistic estimate of your loved one’s time left and ask questions about medication, surgeries, therapy, and any possible side effects. Importantly, when evaluating care options, consider the pros and cons of each choice.
Keep in mind that sometimes treatments prolong life but don’t improve quality of life, or even worse, worsens the quality of life.
In some situations, the care may not provide enough benefit to warrant the pain or inconvenience associated with it. For instance, many patients have feeding tubes for nourishment, but these tubes can cause skin irritations, ulcers, and infections. Dilemmas like this can complicate your decisions about the best care for your loved one.
Where should your loved one receive end-of-life care?
Firstly, you must determine where your loved one should live for the remainder of his/her life. Some elderly or sick people need constant supervision from professional staff, and therefore may do best at a care facility, such as a hospital, assisted living facility, skilled nursing center or inpatient hospice facility. In contrast, others may be physically able to stay at home if they can receive the care they need in their home or in a family member’s home.
When determining the best location for your loved one, realize that more isn’t always better. For instance, a state-of-the-art facility with highly trained professionals might offer the “best” treatments available, but can you afford it? More importantly, does your loved one truly need it? Sometimes a simple arrangement is the ideal way to ease your loved one’s pain and maintain quality of life.
Where does your loved one want to live for end-of-life care?
Speaking with your loved one about where he/she wants to live is an important first step. Try to follow your loved one’s wishes whenever possible, but realize that everyone must be realistic about finances, care needs, and family members’ availability and capabilities.
For example, they might insist on staying home over going to an assisted living facility. Studies have shown that this can have emotional and financial benefits for elderly patients. However, not all families have the time or resources to care for a dying loved one. A care facility is sometimes the only option.
If you decide your loved one needs a care facility, you should expect a negative emotional response. The reality of the situation may push him/her into a depression. Or your loved one may become energized in an effort to stay home. There are normal reactions.
Whatever happens, don’t take any reaction personally. You are not a bad person for making a rational decision about your loved one’s end-of-life care. Give your loved one time to accept the decision – don’t present ultimatums or insist on unfair deadlines.
Should you take care of your loved one at home for end-of-life care?
If you are thinking of keeping your loved one at home for his/her end-of-life care, you must determine if the right amount of help and support can be provided to keep your loved one healthy and safe. And you must make sure the home can accommodate his/her changing medical needs.
Firstly, are you (or another trusted adult) ready? Someone must take on the role as primary caregiver, which comes with a lot of responsibilities, including staying on top of medication and other medical tasks, helping with daily life activities such as toileting, bathing, and eating. Additionally, the primary caregiver must coordinate schedules for other caregivers – either family members or professionals – to make sure your loved one has the care he/she needs at all times. Fortunately, you will likely receive guidance and regular visits from medical professionals.
Additionally, you must determine whether your home (or your loved one’s home) is a practical solution.
If you conclude that your schedule is too busy and/or your home doesn’t have the space, a health care facility likely is your only option.
What issues should you consider?
While deciding where your loved one should live for end-of-life care, perform an honest assessment by asking these questions:
- Are you (or another adult) available to provide 24/7 support?
- Are you physically able to assist your loved one with daily tasks?
- Are you capable of performing any medical tasks, such as keeping track of medications and using needed medical equipment?
- Are you emotionally ready to be a caregiver?
- Can your home (or your loved one’s home) fit a hospital bed, wheelchair, and needed medical equipment?
- If your loved one needs a wheelchair, can you get your loved one in and out of the home? Does the inside of the home have needed handicapped-accessible features, such as access to a toilet?
- Do you have a reliable mode of transportation that can accommodate your loved one?
- Is professional assistance located nearby?
- Does your loved one have any preferences for end-of-life care?
If you would like to take care of your loved one, but cannot afford it, you might be able to get paid for your work. For more information, Read Can You Get Paid As A Family Caregiver?
Also, note that caring for your loved one at home can be physically and emotionally overwhelming. To make the job a little easier, read these posts:
- Can Caregiving Make You Sick?
- Help with the Stress of Caregiving.
- How To Care for Someone Who Is Bedridden at Home
- What is Adaptive Clothing? Who Needs it?
If your loved one has strong religious beliefs, consider these when deciding where he/she should live. For instance, if your loved one is a devout Jew, living somewhere that allows him/her to eat Kosher food and observe the Sabbath would be critical. Similarly, a devout Catholic may want access to weekly Church services, which may prove difficult in a facility. Keep in mind that thoughts of death often make religious people more devout, not less. Your loved one’s end-of-life plan should respect those beliefs.
Need a care facility? Choose carefully.
If you decide your loved one needs a care facility, realize the level and quality of care at facilities varies widely. For instance, your loved one could suffer harm from insufficient or incorrect medical care or could suffer from neglect or abuse. Or the facility may provide top-notch care. But you won’t know if you don’t do your research.
Should your loved one receive palliative care?
Whether your loved one is at home or in a healthcare facility, he/she can benefit from palliative care. Palliative care focuses on the relief of side effects, discomfort, symptoms, emotional stress, and other difficulties associated with serious illness. Importantly, studies show palliative care decrease symptoms and ease patients’ pain.
Palliative care can help seniors, people with cancer, heart or lung disease, victims of debilitating injuries, and anyone suffering from serious medical conditions. Ask your loved one’s medical team if they can prescribe palliative care. For more information, read The Benefits of Palliative Care.
Does your loved one need hospice care?
If/when doctors determine your loved one is near the end, hospice care will likely be recommended. This is a form of palliative care without curative intent. In other words, it helps ease the suffering from the patient’s physical or mental deterioration. It’s not meant to heal ailments but instead focuses on making someone’s final days, weeks, or months more tolerable.
Hospice agencies provide numerous forms of care, including:
- Social services.
- Emotional support.
- Assistance with daily tasks, such as bathing and dressing.
Although hospice care can help patients and families, hospices are increasingly owned by private equity firms, which often place profits above patients. For more information, read The Pros and Cons of Hospice Care.
Stay involved in your loved one’s end-of-life care.
Whether your loved one is at home or in a care facility, it’s important to stay involved in his/her care. Speak with the medical care team on a regular basis. Speak up if something doesn’t seem right. Importantly, effective communication between you and the medical team will help your loved one get any needed treatments, while assuring he/she does not receive unwanted treatments.
And if your loved one is in a facility, visit as often as possible!
Importantly, no matter where your loved one lives, watch out for the following symptoms to determine if your loved one needs their care modified or if additional care is needed:
- Loss of appetite.
- Loss of bowel control.
- Labored or irregular breathing.
- Cold and clammy skin.
- Antisocial behavior.
If you notice any of these symptoms, notify your loved one’s medical team.
Go to medical appointments with your loved one.
When your loved one has a medical appointment, you or another trusted adult should go with him/her. Take detailed notes and record the discussions (ask for permission first!), both of which will make it easier to review the conversation later and to share them with other family members of medical team members.
For tips on getting the most out of any doctor’s appointment, read these blog posts:
- Should you Record Medical Appointments?
- 10 Tips to Communicate Better with Doctors.
- 10 Tips for a Better Medical Appointment.
- Why Take Detailed Notes at Doctor Appointments?
Hiring at-home caregiving help.
If you opt for at-home end-of-life care, chances are you will not be able to do it by yourself. If you are lucky enough to have a large group of family members willing to share the burden, make sure you have honest conversations about time commitments. Many a family have developed long-lasting feelings of resentment over this issue.
However, even if you have other family members who can help you, you might need (or want) to hire caregivers, such as home health aides, to pitch in for all or part of each day. If so, carefully research options to find trustworthy and affordable caregivers.
Should you hire a caregiver through an agency?
There are two options for hiring caregivers – using an agency or hiring an independent, self-employed aide.
You can use a licensed home care agency who can send a caregiver to your loved one’s home to help with activities of daily living, such as preparing meals, eating, bathing, and toileting. Some agencies also have nurses or nursing assistants who can provide medical care.
On the other hand, you can hire an independent, self-employed caregiver to help with daily living activities. You may even find an independent caregiver with medical credentials who can help with medical related care.
The pros and cons of using an agency versus an independent aide.
Importantly, hiring an independent caregiver may save you 20-30%. However, you must take on the responsibility of being an employer, including paying them in accordance with the law or using a 3rd party payment provider to process the payments on your behalf.
Importantly, if you hire an independent caregiver, you must pay Social Security, unemployment and payroll taxes. If your caregiver claims to he/she is an independent contractor who pays his/her own taxes, it is your responsibility to make sure that is the case. Moreover, if you ignore this requirement, you may have to pay back taxes and civil fines and you may face criminal penalties. I suggest you seek the advice of a labor lawyer to assure appropriate hiring practices with respect to federal tax laws.
If you use an agency, they handle taxes, withholdings, and all other paperwork and legal responsibilities.
If you hire a private caregiver, you would be held liable for any work-related injury that occurs on the job. Unfortunately, you would be responsible for any applicable medical expenses and disability payments.
The chances of caregiver harm should not be dismissed. Unsurprisingly, caregivers can easily hurt themselves when lifting, transferring or bathing patients. Additionally, you may be responsible if a caregiver fails to follow infection control precautions and thereby catches a communicable disease from the patient.
If you use an agency, they bear the responsibility for caregiver injuries and harms.
Finding the right person.
If you use an independent caregiver, you must find candidates and interview them. This can be time consuming, but also helps you make sure you find someone with the right skill set and personality for your loved one. Of course, if the caregiver doesn’t work out, you must start the process all over again.
If you use an agency, they will identify caregivers whom they think are good fits. Ideally, you will be able to interview candidates and choose a person you think is the best fit.
See below for tips on hiring a caregiver – either independently or through an agency.
Once you hire an independent caregiver, he/she should be a consistent presence. You and your loved one will get to know him/her quite well, and the caregiver will become familiar with the wants and needs of your loved one. In many cases, a lovely friendship can develop.
In contrast, if you use an agency, you may not get the same caregiver every day. This can be hard for your loved one, who must get used to new people. And it can be hard for you since you must train every new caregiver in the nuances of the job. Be sure to ask about consistency when interviewing agencies.
An agency takes responsibility for training and supervising the caregivers they employ. This includes helping caregivers understand how to care for patients’ needs, what kinds of care services they should and should not provide. Additionally, agencies can help mediate difficult relationship issues such as personality clashes or disagreements regarding job expectations.
On the other hand, if you hire an independent caregiver, all of the above will be your responsibility.
Back up help.
If an independent caregiver becomes ill or has an emergency, you may be left with no help. Importantly, when interviewing candidates, ask if they have connections to other caregivers who can help in a pinch.
On the other hand, if you use an agency, they often have caregivers who can step in and help in these situations. But backup help is not always available, so ask about this when interviewing agencies.
What if a caregiver doesn’t work out?
If an independent caregiver doesn’t work out, you must start the process all over again.
However, if you use an agency, you can tell the agency you don’t think a caregiver is a good fit. Hopefully they have other caregivers available.
How to hire a caregiver.
Whether you decide to hire an independent aide or use an agency, follow these steps to ensure you find the right end-of-life professionals for your loved one.
Write a detailed job description.
Write a detailed job description that clearly outlines the patient’s needs. Include requirements for training or certifications. Can you get by with a home health aide, or do you need a licensed practical nurse or a registered nurse?
The description should also include the need for a reliable mode of transportation and the strength to aid the patient in physical tasks. Lastly, include basic information including expected hours, your loved one’s behaviors and other unique details applicants should know.
Identify options in your area.
There might be a plethora of qualified caregivers in your immediate area. A great place to start is by asking friends, relatives, neighbors, co-workers, and Temple or church members if they can recommend either an agency or an independent caregiver.
If you want to use an agency, look into the local caregiving agencies. Research their online client reviews, testimonials, certifications, and other signs of quality service.
Hiring a family member is an option, but you must be objective. There’s no place for nepotism when it comes to end-of-life care.
Whether you hope to hire an independent caregiver or use an agency, it’s critical that you interview candidates.
Write down a list of questions you want to ask the applicants. Ask about training, years of experience, what they like about being a caregiver and what they find challenging.
Schedule brief interviews in person or over a video call so you can see their faces. Consider inviting a trusted friend or family member to provide a second opinion. Introduce the top candidates to your loved one and observe their interactions. It’s crucial that aides and any other hired help get along well with your loved one.
Hiring an independent aide.
Are they qualified?
Additionally, ask about certifications. Since every state has different requirements, search for “home health aide certifications” and the name of your state.
Do a reference and background check.
Ask for references and call or email them to confirm each applicant is being truthful and has the necessary experience. A good reference will also provide insight into someone’s work habits and behaviors. This information could be the factor that sways your decision.
Importantly, realize prospective candidates will likely only provide you with positive references, omitting anyone with whom they’ve had negative experiences. If they cannot provide you with recent references, ask why.
Additionally, you may want to use a company that can perform a thorough background check on a candidate, including any criminal records and civil court filings. Options include Checkr.com, GoodHire.com, and IntelliCorp.net. Check the websites for services, terms, and fees.
Hiring through an agency.
In addition to the considerations above, ask an agency the following questions:
- Is the agency certified for your state?
- How much will it cost?
- Can you interview candidates?
- Does the agency provide ongoing training for staff? If so, what types of training and how often?
- If your loved one’s needs change due to worsening health, do they have staff who can handle medical-related care?
- Do they conduct drug tests on employees? How often?
- Do they perform extensive background checks, including criminal and driving records?
- What happens if a caregiver cannot work due to an emergency or illness?
- Will one caregiver provide most of the care, or will there by different caregivers every day or week?
- How do you measure your caregivers’ performance?
- How do you determine if a caregiver is a good fit for a client?
- Is a registered nurse (RN) or equivalent case manager available 24/7?
- Can you get references from previous clients for any caregiver you hope to hire?
For more questions to ask when evaluating candidates for home healthcare services, check out this list on RareCaregivers.org.
Monitor how it’s going.
Whether you hire an independent caregiver or use an agency, you must monitor their service to make sure it’s going well. Visit frequently and look for signs of abuse and/or neglect. And keep in close contact and ask them for reports on your loved one’s well-being. Similarly, ask your loved one if they enjoy the caregiver’s company.
If you are not living in the same home as your loved one, visit regularly to check on your loved one and to provide any help needed.
Costs of end-of-life care.
Setting a budget for end-of-life care is one of the most challenging decisions you need to make. The options might initially overwhelm you, so it’s best to start with a realistic benchmark. Consider these statistics about care costs in the United States:
- Hospital care costs in the last year of life average $4,731.
- The average cost for home hospice care is $150 per day.
- Hospice care costs can total up to $17,845 in the final month of life.
Since health costs are sky-high, you sadly may not be able to afford the best care possible for your loved one. For instance, US patients experienced a 150% increase in health care deductibles from 2009 to 2018, and the average family now pays over $6,000 every year. That annual number jumps to $11,618 for end-of-life costs.
Aside from the medical expenses, you must also account for legal fees. End-of-life preparation calls for detailed legal documentation which comes with wildly varying costs depending on the patient’s needs and preferences.
Additionally, you must budget for funeral arrangements which can be quite expensive. According to the National Funeral Directors Association, costs for viewing services, cremation, burials and more average about $7,848. Look into final expense insurance to see if it can help you offset some of the costs.
Here are some other helpful budgeting tips:
- Set aside an emergency stash. You never know when a medical emergency might occur, especially with end-of-life care.
- Be careful about your prescription spending. For tips, read How to Save Money on Prescription Medications.
- Consider using health forums online instead of paying for doctor appointments. However, realize everyone is different and advice you find online may not apply to your loved one’s situation.
Give your loved one the end-of-life care they deserve.
Elderly folks and people with terminal illnesses know their time is ending, so there’s no point in avoiding the topic. Instead, address end-of-life preparations with empathy and objectivity. Discuss the types of treatment, costs, caregiver options, and funeral arrangements, Go the extra mile to give your loved one the care they deserve in their final days, weeks, or months.
I wrote this article with Beth Rush who is the Managing Editor at Body+Mind. She is a well-respected writer in the personal wellness space and shares knowledge on various topics related to disease prevention, health care, and holistic health. In her spare time, Beth enjoys cooking and trying out new fitness trends.
NOTE: I updated this post on 4-7-23.