Mesothelioma.com Resources for Patients and their Families

End of Life Planning

End of Life Planning

Patients and families battling terminal cancer are faced with a number of issues that often take time away from enjoying time with friends and loved ones upon reaching later stage cancer. While issues such as hospice care, funeral and estate planning, wills and do-not-resuscitate instructions are not something most families want to focus on, planning can make the final days of a patient’s much more comfortable and stress free. For our visitors, we’ve assembled resources on a variety of topics. Please explore below.

Wills and DNRs

When faced with an asbestos cancer diagnosis, an individual must confront a host of different issues ranging from seeking proper treatment to planning for the future when they have passed on. Unfortunately, for mesothelioma patients, the cancer is often diagnosed late and no cure is yet available. Though some treatments help extend the victim’s life for a short time, it is necessary to face the reality of death and plan for that time in the not-so-distant future.

One of those essential tasks that must be accomplished is the writing of a will and the issuing of advanced directives for care, especially once the patient has entered the end stages of mesothelioma. Not only will the writing of these documents allow the individual to put their own wishes on paper but will also make decision making a lot easier for the family as their loved one gets closer to death.

Wills

A “Last Will and Testament” is a legal document that dictates how one’s personal affects and wealth will be distributed among survivors. Writing one assures the cancer patient that when he is gone his belongings will go where he wishes them to go. Anyone who dies without a will is said to be “intestate.” This means that the family will need to go through a process known as probate in order to settle the estate of the deceased. At this point, without a will, there is no guarantee that the deceased’s property will be divided as he would have planned.

It isn’t difficult to write a will. An attorney can help draw up the proper legal documents and make sure the Last Will and Testament is registered and in place before the individual passes away.

Living Wills

Another essential legal document is a Living Will. Many hospitals demand you have one before you enter their care. A living will, sometimes called a healthcare directive, puts in writing the patient’s decisions about what kind of medical care he will accept or decline. For example, if the patient does not wish to be placed on a respirator or be fed through a tube, he can indicate that on the living will. However, in many states, living wills can be overridden by family members. That’s why it’s necessary that the patient take time to discuss his wishes with his family to ensure they are followed.

DNRs

A DNR – a “Do Not Resuscitate” order – is also a legal document, signed by a physician at the request of the peritoneal mesothelioma patient or the patient’s legal representative. If the patient has submitted a DNR, the medical team is not allowed to resuscitate in the event of a respiratory or cardiac arrest. Doctors are bound by law to follow a DNR, as long as they know it exists. Hence, it’s necessary to make sure it is included in hospital files.

Note that DNRs don’t always apply in out-of-hospital situations, such as at home in the presence of an emergency medical worker. Some states now have out-of-hospital DNR programs for these purposes. Consult an attorney for more information.

Living Trusts

When an individual is diagnosed with cancer, many decisions must be made quickly. Often, financial issues enter the picture and the individual is concerned about what will happen to their assets after they pass away. While a last will and testament is essential, some individuals also choose to set up living trusts to insure that their property is distributed as they wish while maintaining control while they are still alive.

Becoming more and more popular throughout the last decade, living trusts are trusts that are established while the “grantor” (the person establishing the trust, like patients of pleural mesothelioma) is living. This is in contrast to a testamentary trust, which is not established until after the grantor is deceased.

Living trusts have actually been around for a long time, originating with kings in 16th century England who wanted to be sure the distribution of land was fair and equitable. For centuries, they remained a tool of the rich and it wasn’t really until the late 20th century that it was recognized that anyone with an estate of more than $100,000 or so could benefit from this tool.

What are the Benefits?

In the United States, a living trust is created during a person’s lifetime in order to save money on taxes or, in many cases, to set up long-term property management. Living trusts are also advantageous in that they are not subject to probate – resulting in substantial savings - and can also help regulate the use of the grantor’s assets if he or she becomes incapacitated and unable to make decisions on their own.

Just about anything can be placed in trust, including savings accounts, stocks and bonds, life insurance, real estate, and other types of personal property.

Parties to the Trust

A living trust involves three different parties:

  • Grantor – Also called the settlor or the trustor, the grantor is the individual who establishes the trust.
  • Trustee - This is the person who manages the trust’s assets. In the case of revocable living trusts, this may be the grantor. If the grantor is indeed the trustee, a successor trustee is also named should the grantor die.
  • Beneficiary – This is the individual or individuals who will “benefit” from the established living trust. The grantor may be the original beneficiary and his heirs the “remainder” beneficiaries.

Setting Up at Living Trust

The best way to determine whether or not a living trust is right for you and your estate is to contact an attorney that is well-versed in financial issues. After reviewing your assets and other particulars, he can tell you whether or not this type of financial vehicle is appropriate for your situation. Setting up a living trust doesn’t consume a lot of time and may relieve a substantial amount of burden from the shoulders of the asbestos cancer victim who is concerned about his estate and recognizes that he has little time to make important decisions such as this.

Once it is determined that an individual would benefit from establishing one or more living trusts, an attorney can help put everything in place including the naming of beneficiaries for those seeking to leave property to heirs or other friends or loved ones. When the individual establishing the trust passes away, the property will be transferred to the beneficiaries and the trust will be dissolved.

Hospice and In-Home Cancer Care

For some individuals dealing with terminal cancer, the ability to die peacefully at home is an important priority. There are a number of options available for in-home care such as hospice and other specialty programs.

Hospice Care

Usually, a person is said to be in the end stages of cancer when it is determined that they have six months or less time remaining to live. Usually, symptoms of the disease have progressed and doctors note that there is no hope for a cure or even a long-term remission. The main concentration shifts from treatments and getting better to making the patient as comfortable as possible by controlling the symptoms of the disease, especially pain.

At this point, many people choose to seek out hospice care. Hospice is a wonderful concept that concentrates on palliative care, and hospice workers can also help prepare the patient – and their family and friends – for the inevitable. Hospice can take place in a designated facility but many people choose to have hospice care at home. This allows them to remain in familiar surroundings with people they love.

Mesothelioma patients sometimes have well-meaning loved ones that try to care for them on their own. While this might work in the early to middle stages of cancer, it becomes extremely difficult for an individual who isn’t medically trained to care for an end-stage cancer patient. To avoid being overwhelmed, personal caregivers should seek help for the months prior to their loved one’s death. If this is not an option, however, family caregivers can be trained to do what is necessary to keep a loved one comfortable. Seek out a hospital social worker for more information about training to care for an end-stage cancer patient.

In-Home Care

The best place to turn for suggestions for professional in-home caregivers is the hospital where the patient is being treated. Social workers are on hand to assist with such tasks and they know which in-home care companies are good at what they do. Often, the patient’s oncologist can also make specific suggestions in regards to companies or individuals that other cancer patients’ families have used in the past. You may also find that a number of organizations, like the National Association for Home Care and Hospice, have websites that can assist you in finding a reputable local caregiver.

In many cases, an individual’s personal health insurance may cover some of the costs for in-home care, including hospice. However, all plans differ so it’s necessary to check with your insurance provider for details. For older Americans, Medicare may also assume some of the costs for this type of care. In addition, those on Medicaid may qualify for assistance with at-home care as well. Veterans, especially those whose cancer is service-related, may also be eligible to receive free home care services from the VA. Check with your local Veterans Administration office for details.

About In-Home Care Services

If you’re fortunate enough to have access to 24-hour in-home professional care for your loved one with end-stage asbestos cancer, you’ll find that the care providers will handle most of the aspects of the patient’s care. This includes administering pain medication, assisting with personal hygiene, and feeding the patient.

That’s not to say, however, that family members and friends aren’t a vital part of the dying process. The patient chooses to stay at home so that he can be near loved ones. Therefore, interaction with the sick individual is essential. The patient may seek comfort from those with whom they are closest or, when able, may want to have a conversation about the past or even the future. Sometimes, just knowing a loved one is in the same room is enough.

Often, the end of life for a cancer patient with an aggressive form of the disease, such as mesothelioma, can be quite difficult. Because this asbestos-caused disease is usually diagnosed when it reaches Stage 3 or 4, it may seem that the end comes quickly. For loved ones, the shock of watching their friend or family member decline so rapidly can be difficult. However, with the patient at home, this is a good opportunity to spend time together and studies show that those who die at home tend to suffer less psychologically, making death a more peaceful process.

Funeral Planning

While many patients and families would understandably be averse to entering into discussions of funeral planning prior to a patient’s death, it is important to understand that a wake and funeral can often be the most tangible celebration of a loved one’s life, giving all an opportunity to express mourning and condolences. Most families find it easier and ultimately less stressful to plan ahead.

Who Should Be Involved?

Everyone has a different opinion about funerals. Some find them unbearable while others view them as a celebration of life and plan them accordingly. Similarly, some individuals want to be involved with the planning of their own funeral while others simply don’t want to talk about it at all. Hence, whether or not the cancer patient is involved in planning his or her funeral will be up to that particular patient and how they view their death.

However, you’ll never know the patient’s feelings on this subject unless you ask. If you find that the cancer victim wants to be part of the planning, it may be necessary to nail down the details while he or she is still able to express their wishes. This might be before the asbestos cancer patient enters hospice care when they are still able to think clearly, unhindered by pain medications, and when they can be specific about their likes and dislikes. Don’t be afraid to ask if the patient doesn’t bring up the subject. If they don’t wish to be involved, simply don’t bring it up again and plan to organize the funeral on your own with help from other family members and friends.

Things to Consider

Funerals can get complicated and planning them can be time consuming. They can also be quite costly, so it’s necessary to consider expenses while considering the funeral plans.

By the time you’re ready to put the funeral together, whether it is while the individual is still living or after they have passed, you’ll probably know whether they wish to be buried or cremated. This will allow you to make the proper preliminary arrangements such as choosing a funeral home or cremation company and securing a gravesite.

Other issues to consider will be the location of any religious or non-religious “services” to which people will be invited. If the deceased has a house of worship to which he or she belongs, schedule a time to meet with that person’s spiritual leader. If the cancer patient is planning the funeral, suggest they do the same while they are still able to. This will allow them to not only make funeral arrangements but might also open up the opportunity for them to discuss the end of their life as it pertains to their religious beliefs.

Think about who will be involved in the funeral. Again, if an individual has an interest in the planning of his or her own funeral, ask who they want the pall bearers to be, who should sing at his service, who should deliver the eulogy, and if they would like a post-funeral gathering be held for friends and family. Remember to write down all the details and to respect the wishes of the soon-to-be-deceased, even if you don’t happen to agree with their choices.

If you are planning a funeral after the loved one has passed on, take some time to collect your thoughts and write down your own plan before heading out to make arrangements. Planning a funeral immediately after the death of a loved one can result in overspending due to emotional reactions. Encourage family members to do the planning together in order to support one another through the process. You’ll find that while you may not always agree, the process will be easier when sharing it with someone.

Because pleural mesothelioma is a quick-spreading cancer that is often not diagnosed until it is quite advanced, the opportunity to plan for a funeral may be limited. If it’s difficult for you to speak honestly with the mesothelioma patient about their prognosis and about end-of-life plans, enlist the help of a counselor who is well-versed in such topics. You may find that a simple discussion with a counselor about funeral plans and other issues that an end-stage mesothelioma patient encounters will provide some peace of mind for the patient as they face the future and may allow them to open up the lines of communication with you as well.

Community Resources

Patients who have elected to stay home as they near the end of their battle with cancer sometimes fear finding themselves alone and without the assistance they might need to make it through each day. Caregivers are often overwhelmed as well, looking for resources that may assist them in making their way through to the end of this journey. No one should have to feel this way and, often, there are community resources available to help ease the burden of those facing end-stage pleural mesothelioma.

Meal Assistance

It is essential that the cancer patient eat as well as possible and that the caregiver continues to eat nutritional meals as well, even when it seems as if there’s no time to sit down for a meal or when you are simply too tired to eat. There are a number of organizations – some local, some nationwide – that can assist with meals.

The most well-known organization is Meals on Wheels. In existence since a group of Philadelphia volunteers starting serving meals to shut-ins in the 1950s, Meals on Wheels Association of American vows never to let “a senior go hungry” and the organization is certainly integral in helping senior cancer patients maintain good nutrition. It isn’t difficult to locate a Meals on Wheels group; they’re all over the U.S. Contact your local Agency on Aging for more information or visit their website.

In addition, local senior centers may also have meal programs that include delivery or your local hospital may be able to suggest another option for finding help with meals. It’s also a good idea to speak to a hospital social worker for details on local volunteer organizations that may be able to help.

Other Support Programs

The Cancer Fund of America is a non-profit organization that aims to provide aid to the ill and needy. Their goal is to help relieve the financial burden upon the family and individuals with cancer by providing various products. These include common personal care and cleaning items like shampoos, body lotion, toothbrushes, paper products, soap, wipes, rubber gloves, and more. They’ll also supply cell phones, batteries, and other essentials to keep home-bound cancer patients safe.

The American Cancer Society also offers a large number of different kinds of support programs that might serve to assist late-stage asbestos cancer patients as well. From counselors who will visit with cancer patients and their families to other sorts of assistance programs, the American Cancer Society boasts the most comprehensive list of resources for cancer patients in need.

Patients, their caregivers, or other family members may also seek out other local community organizations – faith-based and secular – who are willing to assist patients who are struggling with the ravages of cancer. Organizations like the Salvation Army, Catholic Charities, the Lions Clubs, or Kiwanis Clubs, as well as local churches and synagogues, may be able to offer help on an individual basis.

Reaching Out

Mesothelioma can be especially debilitating as a patient reaches the end of their battle with this aggressive disease. Due to pain, breathing difficulties, and other symptoms that are common with asbestos-caused cancer, even the simplest task becomes next to impossible. Community organizations are meant to help with these issues and can be paramount to making the last days pass with relative ease. Don’t be afraid to ask for help!

Sources

American Society of Clinical Oncology
www.cancer.net

Save Wealth Estates
http://www.savewealth.com/planning/estate/livingtrusts/

National Association for Homecare and Hospice
www.nahc.org

Meals on Wheels
http://www.mowaa.org/

American Cancer Society
http://www.cancer.org

Cancer Fund of America
http://www.cfoa.org

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