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Caregiving

If It’s Time for Hospice – Here’s some Help

by Guest Blogger
written by Guest Blogger

When someone tells you it’s time to call hospice for someone you love, it’s one of the toughest bits of news you’ll ever hear. However, when you do get that news, you’ll still need good information. Here are a few tips.

Find the Right Fit

First of all, you have a choice about which hospice agency or provider will give care to your loved one. You will often be given the names of one, sometimes up to three, agencies that provide hospice care. A doctor, a hospital social worker, your elder’s nurse practitioner or someone at your elder’s care facility usually gives hospice agency referrals.

You can call one of these agencies and/or you can do your own research on which agencies have the best reputation in your elder’s community. You have a choice. You don’t have to use one of the agencies that was referred to you. Remember this.

Sometimes it is very convenient to use a referral. Often, the person or organization referring the hospice agency to you has experience with that agency. They refer agencies that work well with the system that shares their name. That’s good in many ways.

How to identify the right fit –

  • The right hospice provider will understand your elder’s wishes, will work with the family as partners in care, will be very effective communicators and will be responsive to any changes needed or requested.
  • Interview each of the hospice agencies before you select one.
  • Ask neighbors, friends, coworkers (and even on social media) if they have had any experiences good or bad with hospice agencies. Who would they recommend?
  • Read this helpful list from the American Hospice Foundation. americanhospice.org/learning-about-hospice/choosing-a-hospice-16-questions-to-ask/
  • Check with your state hospice accreditation agency (search Internet for this in your state) on the reputation of each hospice group you’ve identified. Each state does this differently. You can find out if an agency has any complaints filed against them or if they are currently accredited.
  • A list of hospice associations by state can be found at https://hospicefoundation.org/Hospice-Directory
  • Remember you can change hospice agencies if you are not satisfied. Specifics at Medicare.gov – see next point.

Learn What Medicare Covers in Hospice Care

  • Visit Medicare.gov and use the Search box to find information on Hospice.
  • Download Medicare’s publication on Hospice Care. medicare.gov/Pubs/pdf/02154-Medicare-Hospice-Benefits
  • It is important to know what Medicare does and doesn’t cover in the hospice program. Don’t just rely on the hospice agency personnel to tell you. Verify any information you receive.

Read some Good Information

  • The best book that I’ve found on situations you’ll encounter in end-of-life care is Final Gifts by Maggie Callanan and Patricia Kelley. It is a must-read for families experiencing hospice for the first time. Take the time to read it.Please.
  • Visit hospicefoundation.org – the website of the Hospice Foundation of America. Good info available here on all sorts of topics.
  • National Association of Home Care and Hospice at nahc.org. They have a hospice patient’s bill of rights.

Have the Paperwork in order

  • Make sure your elder has an updated Advance Directive – delineating their wishes for end-of-life care (and that you and their providers have a copy of it)
  • Verify that their will is up-to-date and accessible to their attorneys and/or family members designated to be personal representatives.
  • Review Power of Attorney (POA) documents to make sure they match your elder’s wishes. Provide copies to care providers and anyone designated as POA.

Be a Good Advocate

  • Now is the time to speak out or speak for your elder. Their own voice may grow weaker but your advocacy should grow stronger. Find your most diplomatic voice and use it to make sure your elder’s wishes and your family’s wishes are respected and carried out.

You will make it through. You will. It’s hard, it may be long, but it may also bring some of the best, most touching moments you’ve spent with your elder.

By Suzanne Blankenship

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Caregiving

Does Going on Hospice Mean Giving Up?

by Silverado
written by Silverado

Hospice is a special kind of care focused on providing patients with a terminal illness comfort and dignity as their disease takes its course. Because hospice means that treatment will no longer be focused on curing the disease, many families feel that they are giving up on their loved one. While it may be easy to think that, understanding what hospice provides in the context of the patient, their family, and the overall disease progression can provide a new perspective on choosing hospice.

Things to consider about hospice:

A doctor will only place an order for hospice care when they believe curative programs have done all they can. In some cases providing curative treatments to terminal patients can bring added stress and discomfort while hospice will ensure a more comfortable path to the disease’s eventual conclusion.

In some cases, the reduction of stress and strain can actually give patients more time.*

Hospice provides extra help and resources to the family, allowing them to better use the time they have with their loved one and reduce some financial burdens of care.

Many special hospice programs are focused on dignity in death, meaning that the last memories of a loved one can be much happier.

There are many positive reasons for accepting a suggestion of hospice care. To hear a doctor discuss why choosing hospice does not mean giving up, visit this page.

* A 2007 study that looked at Medicare beneficiaries with some of the most common diagnoses leading to death, found that patients who received hospice services lived on average, 29 days longer than those who did not receive hospice care. This study, published in the Journal of Pain and Symptom Management (March 2007) looked at 4,493 terminally ill patients with either congestive heart failure or cancer of the breast, colon, lung, pancreas, or prostate.

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Caregiving

What Hospice Can Do For Your Loved One and You

by Silverado
written by Silverado

November is National Hospice & Palliative Care Month. Although the concept of hospice care has been around for centuries, it is still an area of medical practice that many people today aren’t aware of. Hospice provides comfort and support during the final stages of one’s life. It does more than just meet the physical needs of patients. In many cases, patients require more than just physical comfort. It may be that the patient has spiritual or psychosocial needs that could be fulfilled before their passing. Hospice offers many resources and programs to meet these needs and ensure the patient has dignity and is at peace at the end of their journey.

A Painless Departure

Medication is often used during hospice to relieve any pain that the patient may be going through. Controlling pain is a significant part of allowing a patient to pass away with dignity and gives the patient and their family a chance to share their final moments. Morphine is a common medication used during this process, however, for some individuals, the side effects outweigh the benefits. In these cases, alternative methods of pain relief would be considered.

At Peace with the Mind and Soul

Hospice is accompanied by various programs to meet the needs of not only the patient’s but also their families and friends’ mind and soul. Hospices might provide families opportunities to collect the experiences and memories of their loved one into tangible objects, such as a DVD or a book so that they will always have a piece of them after they move on. At Silverado Hospice, these are known as Memory Catchers. Patients can come from various cultural or religious backgrounds, and they may want that reflected in the way they are cared for and pass away. Hospice can accommodate for any cultural traditions or religious practices they would like incorporated. Grief counseling and bereavement support is also provided to the patient’s family and friends to help deal with their loss.

We Honor Veterans

Those who serve our country in the armed forces are deserving of special honor for their bravery and dedication. Nowhere is this truer than at the end of a veteran’s life, so many hospices, including Silverado Hospice, are proud to partner with We Honor Veterans to help provide care that honors the individual and their service. We Honor Veterans is a program of the National Hospice and Palliative Care Organization, run in collaboration with the Department of Veteran’s Affairs. Through this program, hospices are able to accommodate for the specific needs that veterans often have. These include providing care and support specific to traumas and wars they served in and care focused on population, such as homelessness, substance abuse, and PTSD.

Perhaps one of the best things hospice can do is provide these benefits without adding additional financial burden to the family. Hospice is funded by Medicare, Medicaid and also by most individual insurers for individuals who have a six-month or less terminal prognosis. When needing hospice, it’s important to learn about the hospice benefits, available coverage and hospice care providers near you.

 

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Caregiving

Answers to 5 most Frequently Asked Hospice Questions

by Silverado
written by Silverado

While most people have heard of hospice, a surprising number don’t have a complete understanding of the actual details of the method and purpose of it. November has been declared National Hospice and Palliative Care Month by the National Hospice and Palliative Care Organization (NHPCO), a time to help build awareness of comfort-based care among those it may benefit.

Here are just a few common hospice questions and answers to them:

What is the purpose of hospice?
Hospice is a change of focus from curative treatments to a different set of goals – comfort and quality of life. Comfort care includes physical therapy, spiritual & emotional support, companionship and even the granting of life-long wishes. Hospice gives the patient and their family the opportunity to enjoy life and celebrate the bonds and memories they share.

How does hospice care start?
When a physician makes a prognosis that a patient has six months or less to live they may place an order for hospice care. At this point, a hospice provider can be contacted to start the hospice admission process (please note that “admission” refers to the start of service and does not necessarily reflect the patient being physically admitted to a facility or new location).

Will hospice make my loved one die sooner?
The goal of hospice is to provide comfort as the natural process of dying takes its course. In no way is there any effort or intention to hasten a patient’s death while on hospice, just to provide comfort while the patient’s journey comes to an end.

Does insurance cover hospice costs?
Hospice is funded by Medicare, Medicaid and also by most individual insurers. Hospice coverage is available to anyone that has a six-month or less terminal prognosis. The costs associated with most medications and therapies that relieve pain and provide comfort are covered as a part of hospice. Hospice services can actually remove some financial burden families or responsible parties, who may otherwise need to pay out-of-pocket for medications or equipment like beds or wheelchairs.

Does a patient have to go to a hospice facility in order to receive care?
Hospice services can be provided at any number of locations, including most retirement and assisted living facilities. Because comfort and tranquility are the goals, great effort is taken to keep patients in place and prevent stresses involved with hospital readmissions or relocations to a dedicated hospice facility. Silverado does not operate hospice facilities. Our hospice teams work on-site at patients’ residences, be they a private home, assisted living or other facility.

For more answers to common hospice questions, please visit Silverado.com/hospiceFAQs

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Aging

End of Life Planning Part 2

by Kylie Johnson
written by Kylie Johnson

Planning a Memorial

As your loved ones age, it’s important to know how they want to be memorialized and buried.

While many people still prefer solemn, formal funerals or mourning ceremonies, others are beginning to lean more towards parties and celebrations of life.

Knowing the kind of memorialization that your loved one wants will take the decision making off your shoulders when the time comes to carry out their wishes. Detailing these wishes as part of a legal document will ensure that your loved one is honored and memorialized as they want.

If you’re concerned about the cost of funerals, create a funeral plan at a funeral home. You can work with the funeral home to prepay for all funeral costs, so your family is not burdened with the responsibility of figuring out how they’ll pay for your loved one’s funeral.

How to do it

Find your state on this list from the Funeral Consumers Alliance. Depending on your state’s law, you may be able to make a legally binding document guaranteeing that your loved one’s wishes are carried out. Some states grant the health care proxy (named in the advance health care directive) the power to make funeral decisions for the deceased.

Distributing wealth and assets

According to the AARP, 60 percent of U.S. adults don’t have a will. Without this proof of your loved one’s financial wishes, control of their assets goes to the state they live in, which will distribute it among their family per state law.

A last will and testament solidifies your loved one’s wishes for how their property and wealth gets distributed after their death. Not having a will to go by can leave family members feeling slighted and resentful at their share of the loved one’s assets.

If they want to donate to a cause, a business or a university, the will can accomplish that. A will may also state that the deceased wants to establish a charitable trust in their name, distributing out their money over time to certain individuals.

Getting your loved one’s financial affairs in order will decrease the stress that the family has to feel later.

How to do it

Talk to a lawyer about setting up your last will and testament. Come with ideas on:

  • Who your loved one’s executor will be
  • Who your loved one’s beneficiaries will be
  • What your loved one wants to leave to them
  • Guardians for their minor children if they have any
  • Two witnesses who will attest to watching your loved one sign the will
 

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Aging

How to Make End of Life Plans Part 1

by Kylie Johnson
written by Kylie Johnson

According to the CDC, around 60 percent of U.S. adults have no plan in place for the end of their lives. Consequently, close friends and family are left to sort through personal belongings, funeral arrangements and asset distribution while they’re mourning. Solidifying an end of life plan can ease the minds of everyone involved. Your loved one’s final wishes can be known and recorded as an objective legal document. This gives you and your family a map to follow.

This process involves discussing all the conditions surrounding someone’s death before they die, as opposed to during or after. Having these discussions up front can make the process easier.

This article explains some of the benefits of end of life planning and explains the different parts of it: advance health care directives, memorialization and burial, financial affairs and preferred location of death.

Making health care decisions

An advance health care directive is a form that tells you how your loved ones want to be taken care of, in the case that they’re unable to do so themselves. Advance health care directives are sometimes known as living wills. An advance health care directive or living will is different from a power of attorney, which ensures that an agent of your loved one’s choosing can make medical decisions that are not covered by a living will.

If they’re incapacitated by a disease, an advance care directive will specify whether or not they wish to receive medical treatments such as:

  • CPR
  • Artificial respiration
  • Artificial hydration
  • Feeding tubes
  • Ventilators

 

Advance care directives allow adults of any age to control how they spend their final days.

These forms, once signed by two witnesses, are legal documents with legal power in the United States. While they don’t force your loved one’s doctor to comply, a doctor can’t be legally prosecuted for doing so.

However, not all situations will be covered by the advance health care directive. In the cases that aren’t covered, doctors can consult the health care proxy.

Health care proxy

Named in the advance care directive, the proxy (sometimes known as an “agent”) is legally able to make health care decisions on behalf of the dying person in the event that they’re unable to do so for themselves. The proxy can be anyone: friend, family, it doesn’t matter. This applies only when the advance health care directive doesn’t cover the situation.

How to do it

Download and print the advance health care directive form for your state. After talking it over with your loved one, ask them to fill out the questions or help them fill it out. Have two witnesses over 18 years old present when your loved one signs it.

The document is legally recognized once your loved one and witnesses have signed it, so you’re not required to take it to a lawyer. However, it’s always recommended to get legal consultation on these issues, if you’re able.

Make several copies for yourself, your loved one, concerned family members, your loved one’s physician and faith leaders. Discuss the advance health care directive with your loved one’s physician, and make sure they understand what your loved one wants to avoid confusion.

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Why don't we talk about death?
Aging

Why don't we talk about death?

by Barbara Bates Sedoric
written by Barbara Bates Sedoric
Why don’t we talk about death? First of all, it’s going to happen to each and every one of us. Yet, why does initiating a conversation about planning ahead for death always seem to make people run in the other direction? Why don’t we talk about death?
What is it that makes us so fearful? Do you think that having conversations about end-of-life plans will in fact “jinx” you? Why don’t we talk about death?

Why talking about death and planning ahead is beneficial:

  • We are less prepared to tackle end-of-life decisions during a crisis (when incapacity occurs or when a loved one dies). Why don’t we talk about death
  • The lack of advance planning often divides family members when making difficult decisions.
  • The emotions of grief and vulnerability tend to increase all kinds of costs – including unplanned funeral expenses.
  • It’s better to be proactive and get ready than to be reactive with little or no guidance.
  • We are living longer and the increase Alzheimer’s presents a greater, more urgent, need to plan ahead.

Having counsel from both a Financial Advisor and an Estate Attorney is a good idea.

Financial Advisors engage in a wide range of conversations with their clients when strategic financial planning is done during their lifetimes. If your financial advisor is a fiduciary, the conversations should also include your individual life goals, family legacies, and the stewardship of your assets before and after death occurs.
Estate attorneys help adults plan ahead by writing legal documents, such as a will, to dictate what will happen to your money and real estate, minor children, and other assets in the event of incapacity or death. Estate planning also includes getting beneficiary designations in order, executing a durable power of attorney, and a health care power of attorney for if you become incapacitated and can’t speak for yourself.
It’s also a good idea to talk to your spouse, partner, aging parents and your adult children while you have opportunities to do so. Why don’t we talk about death?

Questions that might help jump-start those conversations:

  • What music would you like at your funeral or memorial service?
  • What interesting things do you want included in your obituary?
  • Does anyone know all of your passwords or where to find them?
  • If someone wants to make a donation in your memory, where would you like that donation to go?
  • Who should deliver the eulogy at your service?
  • What do you want your family to know that you haven’t yet communicated?
  • What do you want to have happen to your dog after your death?
  • What do you want done with your belongings?

“It always seems too early until it’s too late” is the theme for National Healthcare Decisions Day, held annually on April 16. NHDD.org is an organization whose mission it is to help you understand the value of advance healthcare planning encouraging every adult to make an advance care plan for the sake of their loved ones.

So why is it important to talk about death?

Because any information given or received is better than no information at all and because “what is in your head is gone when you’re dead”. You might even overcome your fears so that talking about death isn’t scary. Why don’t we talk about death?

Why don’t we talk about death

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How to Be a Health Advocate for Your Aging Parent
Aging

Help Adult Children face Your End of Life

by Barbara Bates Sedoric
written by Barbara Bates Sedoric

There are many reasons adult children might struggle to face their parents mortality. Let’s face it, no one wants to think about death and dying much less talk about it. Yet, it’s inevitable and deserves setting aside time to have a very important conversation while you are able to. Help Adult Children face Your End of Life

Help Adult Children face Your End of Life

As you grow older and end-of-life preparations are considered, there comes a time when you will need, and want, people to join in and help you as you go through the process of getting your affairs in order. At the very least, you’d like your adult children to acknowledge that the road does not go on forever and you’d like to be prepared for your sake as well as for theirs.

Specifically, we’re talking about having face-to-face, open and honest conversations with your adult children. As much as we might wish it were different, things will not go on as they are today, at this very moment, or perhaps even next month or this year. Hopefully, you will not have to undertake these preparations and discussions alone.

Do you have children who will engage in conversations that are sensitive? Will your spouse be open to and able to lend a hand in making some decisions with you? Should you consider having conversations with the care manager at the retirement commmunity or health facility where you live and have been cared for? Can your trusted advisor help guide these conversations between you and the next generation?

What your adult child might really be struggling with as you near your end of life is their own mortality. After all, if you’re getting older, they (your children) are too…and they may feel like they are not that far behind you and therefore choose to avoid the topic at hand.

To get started, you can encourage and allow your child to express whatever feelings they may have about end-of-life. Ask them some open ended questions such as “what worries you the most?” If you’re able to, it might help to arrange a specific time to talk with your adult children together with an advisor – someone they respect and trust – or perhaps even engage the services of a professional therapist.

You might suggest that as your end-of-life approaches, getting your affairs in order is not only important to you, it will also help them in the end and save them time and reduce family pressures that often arise when the inevitable happens. Additionally, you might wish to alert them about, or even include them in, the planning process so they can learn about what matters most to you. Perhaps you will consider telling them about an item that is meaningful to you that you have chosen as a special keepsake, just for them.

One of the greatest gifts of all that you can give your adult children is access to information when they will need it most after a life-changing event, such as incapacity or death, occurs. LastingMatters provides an easy, affordable, and comprehensive way to compile, document and organize your personal wishes and intentions related to end-of-life planning and planning for death, helping to ensure peace of mind for you and your loved ones.

Help Adult Children face Your End of Life

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Initiating End-Of-Life Conversations with Parents
Aging

Initiating End-Of-Life Conversations with Parents

by Barbara Bates Sedoric
written by Barbara Bates Sedoric

Whether you plan ahead or you’re thrown into a situation due to a sudden health crisis, end-of-life conversations are never easy. Couple that with trying to initiate these conversations with your aging parents. End-of-Life talks can be excruciatingly delicate and sometimes difficult. One must simultaneously tread lightly, yet boldly. Initiating End-Of-Life Conversations with Parents

Here are some basic guidelines to help prepare for these very important and personal discussions. Initiating End-Of-Life Conversations with Parents

Start now Initiating End-Of-Life Conversations with Parents

If you think it’s difficult to find the time today, it could be much harder. Imagine what it will be like trying to discuss end-of-life matters with your mom when she is gravely ill, incapacitated, or worse. Imagine what would happen if she were no longer here to have these conversations. In other words, don’t wait. Your parents are likely the healthiest they will be today.

Pick a comfortable spot, both mentally and physically

Do not bring your mother (or father) to the local Applebee’s to have this type of conversation. She does not want to discuss her personal matters while enjoying a meal in a restaurant. We suggest initiating this talk at your parents’ home, where they are most comfortable and it’s private.

Do your homework Initiating End-Of-Life Conversations with Parents

Before initiating this meeting, prepare a list of questions to help your parent. We suggest referring to one of the many checklists in The LastingMatters Organizer. You may think of the basics (ie. whether they prefer a traditional graveyard burial or they wish to be cremated). However, you may be overlooking dozens of other considerations that you haven’t thought about.

Be straight and be clear

Ease into the conversations by first letting your parent(s) know that you honestly don’t want to broach end-of-life subjects. However, it is best for everyone involved to be prepared in advance for any kind of future life-changing event – incapacity, dementia or death. Remind them that a feeling of accomplishment comes from the knowledge that their affairs are in order. With their wishes articulated, affirm that their intentions will be honored. Help your parent(s) understand that these conversations are tough for all involved, but these conversations are also the right thing to do. Initiating End-Of-Life Conversations with Parents

Give yourself, and your parents, a break

When discussing end-of-life matters with a loved one, often the biggest concern is how to make your parent(s) most comfortable in tackling these important decisions. This is not going to be a one time conversation and will take time for your parents to consider and organize their wishes. Take breaks from these discussions, but be sure to revisit topics. Continue to gather the information that will be needed, and wanted, when something happens. Easier said than done, right?

This is by no means an all-inclusive list, but it will help you ignite a conversation.

Initiating End-Of-Life Conversations with ParentsWhile you, and/or your parents, may have your own checklists, referring to The LastingMatters Organizer as a comprehensive tool and resource will make the task and the conversations easier.

If for any reason your parents choose not to engage in these conversations with you, you can simply ask them to quietly fill out the Organizer. The information they can provide you will be a gift to you in the future – when it matters most.

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