Is A Hospice Program Right For Your Mom Or Dad?

Mom's 90th BirthdayWhen the medical director of my mother’s assisted living residence called me I was curious to know what she wanted to talk to me about. After informing me how much everyone at the facility loved my mom she then made a statement that took me by surprise. “I think you mom would benefit greatly by going into a hospice program.”

My thoughts immediately jumped to “Oh my God, she’s about to die. The end is very near.” The next day a hospice nurse visited me and explained to me what hospice was and whom it could benefit. She did state that in order to qualify for hospice an individual is expected to die in 6 months or less. But she added that some patients have been in hospice for a year or more. And in some cases they have improved so much they are taken off of the program.

I learned that Medicare would pay for an upgrade to her wheelchair that would make her much more comfortable and provide for any other medical equipment she needed. A nurse would be assigned to her who would monitor her condition weekly, review her medications and report back to us if any changes in her condition occurred. In addition a home health aid would visit her three to four times a week to bathe her or provide any other personal care that would benefit her.

She would be assigned a social worker that could assist her and our family with any emotional support that was needed. An experienced physician would participate in the development of her care plan and oversee her medical regimen. And all of these services would be fully covered by Medicare.

Within two days the nurse had visited her, made specific recommendations to changes in her meds and brought in a new mattress and a more comfortable wheelchair for her. I was amazed at how quickly she went into action and how knowledgeable she was about the aging process.

I had noticed for a few months that my mother had deteriorated significantly but I wasn’t sure how to deal with this and who to talk to. The hospice nurse made it clear to me she was available 24 hours a day, seven days a week if I had any questions or concerns. I immediately felt much more comfortable knowing that someone was watching her situation closely and would be available whenever we needed her.

If you have a family member who is beginning to show signs of slipping away I would recommend strongly that you find out more about the hospice program and have a hospice nurse visit you to answer your questions. In most cases she will do an evaluation of your loved one at no cost. The website for the National Hospice and Palliative Care Organization (www.nhpco.org) will help you find a hospice organization in your area.

Share Your Wisdom With Your Children

Dad and StephDid your parents share their wisdom with you? Did they make you aware of anything they learned from their own successes and failures? Was it helpful to you? Have you thought about sharing your wisdom with your own children?

Susan Turnbull in her book, “The Wealth of Your Life” reminds us that “What you have learned is as valuable as what you have earned.” If you haven’t taken the time to share the important lessons you learned in life with your children, it’s important to do so now.

Richard Lieder, a highly respected executive coach, wrote in his book, “Life Reimagined, Discovering Your New Life Possibilities”, “As we move through middle age, the uncertainty of the world moves us to focus on what matters; our own purpose and our connection to others”

So where do you start? How do you pass on your legacy to the next generation? By writing them a “Legacy Letter”. It is a letter to your family that defines what has been important to you in your life and what you want to pass on.

First decide whom you want to send the letter to; your children, your spouse, your brothers and sisters

Second make some notes in the following areas:

• Your values and the things you did in your life to act on your values
• Something you learned from your grandparents/ parents/spouse/children
• Something you learned from experience
• A mistake that you made that you learned from.
• Something you learned that you’re grateful for
• Your hopes for the future

Now take these notes and weave them into a letter that is addressed to the audience you want to letter to go to. Don’t forget to add stories from your personal life that expand the points you’re trying to make. And just like that you have created a Legacy Letter.

Share it with your loved ones the next time you get together with them. And always remember, “The gift of communication is the greatest gift you can give your family.”

What will you do with all your stuff?

images-1One of the greatest concerns I have noted amongst older couples is, “What will happen to all our stuff when we are gone?” I can remember having a family meeting with a couple in their 70’s and their four adult children and noticed that mom was getting very anxious. At first I thought her anxiety was due to the fact that she was preparing to discuss her end of life planning with her children.

But when I asked her what her concern was, she responded, “I don’t know what I am going to do with all my stuff! I have several beautiful collections and I don’t want my children fighting over the objects right after my funeral or just putting them out in the yard for a giant tag sale!”

She admitted to me that she hadn’t slept for several nights thinking about this terrible possibility. She confided in me that her husband still wasn’t talking to his sister after 20 years because she had raided the house when their parents died and taken everything of value before he had even arrived. “I don’t want that happening in my family!” she proclaimed.

So what did we do? I asked her to describe her valuable collections to her children at the family meeting. She then created a list of all the items and asked each child to review them. If they wanted an item they were asked to put their name next to it. If more than one wanted something they both listed their names next to it and mom would decide who got it.

Mom collected the lists after the family meeting, reviewed them over the next few weeks and then reported to her children who would get what. No one disputed her decisions. After all, the collections were hers and she could give them to charity if she chose. The next time I talked to her I noticed her anxiety level was significantly less. She told me that for the first time in a long time she was sleeping very soundly.

If you are a parent, don’t do your children a disservice. Don’t leave it up to them to decide what to do with your stuff after you are gone. The loveliest relationships are often spoiled by siblings fighting over the silver forks. Meet with your children and tell them what you intend to do. If you are an adult child, strongly suggest to your parents that they follow the procedure my client did. It will save much grief and anxiety for the whole family.

Consider a POLST Form for an ailing parent

images-1In 2011 I wrote a post that describes DNR’s (Do Not Resuscitate Orders) http://parentcareplanning.wordpress.com/2011/05/26/do-not-resuscitate/

“A do not resuscitate order is a binding legal document that states resuscitation should not be attempted if a person suffers cardiac or respiratory arrest. A DNR does not affect any treatment other than that which would require intubation or CPR. Patients who are DNR can continue to get chemotherapy, antibiotics, dialysis, or any other appropriate treatment.

If you have an ailing family member who does not wish to be resuscitated they should complete this document and have it signed by their physician. But please be careful to use the form approved in your state.

This summer I attended an excellent seminar presented by Amy Florian, founder of Corgenius, www.corgenius.com. Amy described another tool that can be used to supplement the DNR. It is called the POLST form.

POLST stands for Physician Orders for Life Sustaining Treatment. It is is a form that gives seriously-ill patients more control over their end-of-life care, including medical treatment, extraordinary measures (such as a ventilator or feeding tube) and CPR.

The POLST Paradigm is an approach to end-of-life planning emphasizing: (i) advance care planning conversations between patients, health care professionals and loved ones; (ii) shared decision-making between a patient and his/her health care professional about the care the patient would like to receive at the end of his/her life; and (iii) ensuring patient wishes are honored.

As a result of these conversations, patient wishes may be documented in a POLST form, which translates the shared decisions into actionable medical orders. The POLST form assures patients that health care professionals will provide only the treatments that patients themselves wish to receive, and decreases the frequency of medical errors.

The National POLST Paradigm originated in Oregon in 1991 as leading medical ethicists discovered that patient preferences for end-of-life care were not consistently honored. Recognizing that advance directives were inadequate for the patients with serious illness or frailty– who frequently require emergency medical care – a group of stakeholders developed a new tool for honoring patients’ wishes for end-of-life treatment.

Although the POLST Paradigm began in Oregon, it quickly spread to other states, which tailored the paradigm to fit their unique legal, medical, and cultural contexts. Among the first states to develop POLST Programs were New York, Pennsylvania, Washington, West Virginia, and Wisconsin. These states – and others – have become leaders in improving the POLST Paradigm and demonstrating its importance to achieving patient-centered outcomes.

You can go to the POLST site to determine if there is a POLST program approved in your state http://www.polst.org/programs-in-your-state/

“My Healthcare Wishes” App can save your life!

hands of old and youngYou may have gone to the trouble of making sure all your family members have completed the important documents that they need if they suffer a critical illness or have a terrible accident. But what if they (or you) are traveling and don’t have the appropriate documents with them? These documents include a durable power of attorney, a health care proxy, a living will and a DNR ( Do Not Resuscitate) order.

Now there is a solution. It is an Apple or Android app for the smartphone called “My Health Care Wishes”. It was created by the American Bar Association. Your family members don’t even need to have the app or a smartphone themselves as long as you have entered the information on your phone and they carry a wallet card indicating this. The information includes: contact information, summary of healthcare wishes, PDF copies of Advance Directives, Medical information, prescriptions, key medical contacts, healthcare proxy information and more.

Let’s say your Mom lives in San Francisco and has a health care directive with end-of-life decisions. You’re her primary proxy and live in Washington DC. She’s on vacation in Boston and rushed to the ER at Mass General Hospital. A My Health Care Wishes wallet card is found stating her proxy has her advance care plan on his iPhone—that’s you! You’re coaching soccer but with one click you are able to email the documents needed to speak with staff to make key decisions. Crucial moments are saved and you’re there in a way never possible before in a medical crisis.

Another example: Your Dad is 89 and your Mom is, 91. He takes her to the hospital and she’s admitted to the ICU but he’s told he can’t make medical decisions for her even if she is incapacitated. She’s his wife and he’s her proxy. What’s this about? He brought the wrong form with him! He brought the Power of Attorney document (POA) that only applies to financial & legal decisions. The Durable Health Care Power of Attorney (HCPOA) is what he needs but it’s at home and no one else is there. He has a cell phone, calls you, his daughter. You have what he needs securely stored on your Smartphone —the document showing your Dad as primary proxy. A click and the correct document is emailed, and your Dad losing little time tells doctors what his wife of 65 years wants.

The medical community is very complex and filled with rules and disclaimers. If you don’t have access to the right legal documents your life or another family member’s life may be in danger. Get on your computer right now and order “ My Health Care Wishes” from the Apple App Store or Google Play!

http://www.americanbar.org/groups/law_aging/MyHealthCareWishesApp.html

Have You Attended a Death Cafe?

Death CafeAt a Death Cafe people, often strangers, gather to eat cake, drink tea and discuss death.

Their objective is ‘to increase awareness of death with a view to helping people make the most of their (finite) lives’.

A Death Cafe is a group directed discussion of death with no agenda, objectives or themes. It is a discussion group rather than a grief support or counseling session.

Death Cafes are always offered:

– On a not for profit basis
– In an accessible, respectful and confidential space
– With no intention of leading people to any conclusion, product or course of action
– Alongside refreshing drinks and nourishing food – and cake!

Death Cafe is a ‘social franchise’. This means that people who sign up to the guide and principles can use the name Death Cafe, post events to the Death Café Website (www.deathcafe.com) and talk to the press as an affiliate of Death Cafe.

Death Cafes have spread quickly across Europe, North America and Australia. As of today, 803 Death Cafes have been offered since September 2011.

The Death Cafe model was developed by Jon Underwood and Sue Barsky Reid, based on the ideas of Bernard Crettaz.

Death Cafe has no staff and is run on a voluntary basis by Jon Underwood in Hackney, East London. Also Lizzy Miles who ran the first Death Cafe in the U.S. and Megan Mooney who runs the Death Cafe Facebook page have played a significant role in Death Cafe’s development.

People often ask why the Death Cafes are so popular. Everyone has their own reasons for getting involved in Death Cafe. – See more at: http://deathcafe.com/what/#sthash.eYN3ZxOa.dpuf

Major Breakthrough in Medicare Coverage for Chronic Illnesses

hands of old and youngFor years we have accepted the fact that Medicare will only cover physical therapy for patients who are continuing to improve. When my mother broke her hip the therapists informed her doctor that Medicare coverage for rehabilitation would cease after only three weeks of therapy. They told us that she would have to return to her assisted living residence even though she was still not able to walk. Their conclusion: She was no longer improving and it was likely she would never walk again.

Of course this was complicated by the fact that she had dementia and couldn’t remember the exercises they had prescribed for her a few minutes after she left the therapy room. But we accepted their conclusion without making a fuss and she has been in a wheelchair for the last five years.

But a major change has recently occurred in Medicare. One that has been kept very quiet but will have a huge impact on patients who have chronic illnesses. Medicare officials updated the agency’s policy manual in January. This is the rule book for everything Medicare does.  They stated that Medicare will now pay for physical therapy, nursing care and other services for beneficiaries with chronic illnesses like Multiple Sclerosis, Parkinson’s and Alzheimer’s disease in order to maintain their condition and prevent deterioration.

This dramatic change is due to the settlement of a class-action lawsuit filed in 2011 against Kathleen Sebelius , the Secretary of Health and Human Services by the Center for Medicare Advocacy and Vermont Legal Aid on behalf of four Medicare patients and five national organizations, including the National Multiple Sclerosis Society, Parkinson’s Action network and the Alzheimer’s Association. The settlement affects care from skilled professionals for physical, occupational or speech therapy and home health and nursing care, for patients in both traditional Medicare and private Medicare Advantage plans.

The change will have the greatest impact on seniors who want to avoid having to go into an institution to get care. People with chronic illnesses like Parkinson’s or MS may be able to get the care they need and stay in their own homes.

Existing eligibility criteria for Medicare rehabilitation benefits have not changed however. To be admitted to a rehab. facility or nursing home for covered care the patient must have spent three consecutive midnights in the hospital as an admitted patient and the patient must be referred by a Doctor’s order prescribing skilled nursing home care not custodial care.

For home health coverage, the beneficiary must have a Doctor’s order for intermittent care ( every few days or weeks) provided by a skilled professional or outpatient therapy, social work services or a visiting nurse. Beneficiaries receiving skilled services at home are also eligible for home health care aides for assistance with bathing, dressing and other daily activities.

The settlement also provides for a review of claims that were denied in the past three years solely because patients were not improving. Officials have posted a form on the Medicare site to repay beneficiaries for the care they paid for themselves. This form must be submitted by July 23, 2014 for claims that were denied from Jan. 18, 2011 to Jan. 24, 2014. Claims denied between Jan. 25, 2013 and Jan. 23, 2014 must be submitted by Jan. 25, 2015