Babette's Scarf

I've had the pleasure of knowing "Babette" for a few months now. I usually visit with her for a couple of hours and send her daughter and son-in-law out to run errands or just spend time with each other outside of their home. Babette has an amazing life story and I love soaking in her wisdom. Confidentiality prevents me from telling some of the more unusual aspects of her life, unfortunately. She immigrated from eastern Europe when she was a teenager; her father was already in the US and sent for her. When she arrived, she found out that he had died. Can you imagine being in that predicament? The precursors to WWII were starting back home so she couldn't send for the rest of her family either. She met and married her husband, who then joined the military and fought during the war. She raised her family, weathering several losses. She has a truly positive attitude. She is accepting of her decline and feels ready to die. Last week, in fact, she told me when she goes to bed at night she hopes she won't wake up and that she is disappointed when she wakes up in the morning. Babette had a bit of adjusting to do when she first became ill; she felt a lack of purpose. She was used to working on projects and staying active. When I first visited, she told me she didn't want to start something and then get too sick to finish it. However, it didn't take much to convince her to start out slow and pay attention to what her body was telling her. Her daughter helped her with some sewing projects and Babette started crocheting again.

There was a few week gap between visits while I was on vacation because of the way my trip fell. When I returned from North Carolina, Babette was so happy to see me. She told me to go out to the kitchen and get her the scarf. I thought she was cold so I found the scarf and brought it in to her room. She told me she had made it for me! Babette crocheted scarves for the hospice RN and volunteer as well, plus one final scarf for her daughter. She said mine was the second to last scarf she made and she knew her crocheting days were done, her hands were too stiff now. She said she and her daughter had been paying attention to what clothes I wore each week so they could pick the right color. How sweet is that? She finished it while I was in NC and then anxiously waited for me to come back so she could give it to me. I've worn it just about every day since she gave it to me last month. Such a precious, warm gift.

Unexpected

I've written before when a patient "surprises" us by not following the normal end of life trajectory. There are signs and symptoms that death is getting nearer, even up to a few months before a person dies. We, as hospice professionals, note these changes each visit and prepare the patient and family for what is going to happen. Every once in awhile, the unexpected happens. You may be talking to the patient, nothing appears amiss and two hours later, they're dead. My experience Friday takes the cake, however.

The lady had only been on our program for a couple of weeks. In fact, I hadn't met her yet because her POAH was going to be out of town and they wanted to delay our first visit until next Tuesday, when another friend would join us. The patient had no children but had a group of friends that were like family to her. On our first visit we were going to talk about Advance Directives, long-term care planning, and all that good stuff. She was in no way imminent and was living at home independently. I happened to be with the hospice RN when she got the call from the office. The patient's POAH "June" was back and supposed to take the pt. to a doctor's appointment that morning but "Magda" wasn't answering the door. She had gone around the back of the house and could see that Magda was slumped over in her chair. While June waited for her husband to bring the spare key, the RN and I headed over. When I arrived, it was confirmed that Magda had died. Her friends had spoken with her the night before and nothing was different. They expected this morning would go smoothly with the doctor and then they were going to finish taking down the Christmas tree decorations, which Magda decorated magnificently and always kept up through at least the end of January. June could not have guessed that the last time she would see Magda face to face would be before she went out of town last week.

Magda looked absolutely peaceful. She had her make-up on, which her friends said was a daily custom. She was drinking her morning coffee. We won't ever know what she died of but it didn't appear to cause her any pain or discomfort. June and her friend "Betsy" found comfort that Magda died so unexpectedly. They said Magda would have had a hard time letting a hired caregiver take care of her whenever it became necessary. Magda always took care of everyone else and could be private about her own business. We sat and talked about Magda's life while we waited for the funeral home, which Magda had pre-arranged several years ago. She sounded like a firecracker of a lady. I would have enjoyed getting to know her but for her sake, I'm glad we'll never get to meet.

Confronting God

Earlier this week I went to meet with the family of a new pt. He was in his 40s, just diagnosed with the nasty glioblastoma in December and now on hospice. He had 2 teenage children and a wonderful wife, as well as a huge network of support from his extended family, friends, neighbors, and church. This was a man who was dearly loved by all who ever met him. He was mostly unresponsive the day I was there and his wife knew it was a matter of time. She talked about how blessed they have been by the help they've received from their community: prayers, meals, fundraisers. She talked about how strong the patient's faith is, how it has grown even stronger as he has declined. He is minutes from heaven where he would meet God and where there is no such thing as glioblastoma, pain, or tears. Then she said, "And me? I just want to kick God in the balls." Imagery aside, I don't think these emotions are incongruous with faith.

The fact is we live in a fallen world. We live with war, disease, and the depravity of mankind. Most of us don't live with those realities on a day to day basis, outside of the occasional cold and jerky coworker. When something truly bad does happen, we are caught off guard even though we're not promised easy "get everything you want" lives. When you're basically content, it's not hard to believe that your life will continue going on that way. A terminal illness, of course, drastically changes one's outlook. We are forced to grapple with what we believe. I believe it is OK to question God because He desires a relationship with us. He wants to dialog about our lives. He wants to know what we're thinking and feeling. So when this wife talked about wanting to kick God in the balls, I thought, "what a perfect expression of her anger and helplessness." She didn't believe that God caused the cancer but she was angry that their prayers hadn't taken it away. She could still talk about God's goodness and faithfulness but that didn't negate her anger about losing her husband. I'm glad she felt free to express herself. We may never understand why bad things happen but God knows and He will use all things, no matter how awful, for good (Romans 8:28).

Palliative Care Grand Rounds 2.2

Alive Hospice is hosting the latest edition of Palliative Care Grand Rounds. Jared found some great new additions to PCGR so be sure to check it out!

Oscar

Meet Oscar the "Death Cat." Please don't think of him as a furry grim reaper; he's been thanked by families in their loved one's obituary for the comfort he offered during their final hours. Oscar is a therapy cat at Steere House Nursing and Rehabilitation Center in Providence, R.I with an uncanny knack for predicting when nursing home patients are going to die. The facility cares for people with dementia and in the final stages of various illnesses. Oscar seeks out the dying, snuggling with the patient and family members until the patient passes; with others, he smells the patient's feet, sits outside a closed door until admitted, or refuses to leave a dying patient's bed. Since nursing staff first noted Oscar curling up with residents before they died, he has accurately predicted about 50 deaths. Dr. David Dosa first published an article about Oscar in 2007 in the New England Journal of Medicine and is now releasing a book 'Making Rounds With Oscar: The Extraordinary Gift of an Ordinary Cat.' Dosa notes, "I don't think Oscar is that unique, but he is in a unique environment. Animals are remarkable in their ability to see things we don't...Animals know when they are needed."

Poll results

Thanks to all who voted in the poll.

The top 3 vote-getters were:
1. Patient/family stories
2. Social work/therapeutic techniques
3. Bereavement work

After Words

Losing a loved one is difficult no matter what the circumstances. When a life limiting prognosis is known, it is helpful to make funeral arrangements ahead of time. However, important financial decisions do not end there. This list is a road map of basic actions you or a designated third party will need to take during the first few months after the death of a loved one.

1. Collect the Necessary Papers

• Death certificate. The funeral director will provide a certain number. You can purchase additional death certificates through the funeral director or the county health department. At least a dozen certified copies of the death certificate is recommended. Most companies will want a certified copy but use a photocopy when able to save money.
• Marriage certificate. Available from the county clerk where the marriage license was issued.
• Birth certificate(s). For the deceased and any dependent children. Available at either the state or county public records office where the person was born.
• Social Security number(s). For the deceased, spouse, and dependent children.
• Discharge papers. If the deceased served in the military, a copy of the discharge certificate is needed. If you do not have a copy, contact National Personnel Records Center (9700 Page Boulevard, St. Louis, MO 63132-5200), at the attention of the branch in which the deceased served.
• Original will. The lawyer who wrote the will may have it or it may be with the personal belongings of the deceased or in a safe deposit box. Be aware that some banks have special procedures before letting anyone in to the safe deposit box.
• List of property. Complete list of what the deceased owned including real estate, stocks, bonds, bank accounts, deeds, and personal property.
• Recent income tax returns. If the most recent income tax return cannot be found, you'll need to fill out IRS Form 4506. There is a $57 fee. You'll also need to attach documentation that you are authorized to act on behalf of the deceased, such as letters from the probate court.
• Find bankbooks or account statements, stock certificates or investment account statements, and insurance policies.
  

2. Contact Insurance Companies

• Contact each insurance company to notify of your loved one's death and find out how to claim the policy benefits. Ask what forms will need to be filed.
• Each company will need a statement of the claim and a death certificate before the surviving spouse or dependent children can receive benefits. Keep copies of all correspondence. If you speak with a claim representative by phone, note the representative's name, date and time that you called, and what was discussed.
• In addition to life insurance, find out if other forms of insurance covered the deceased. Some loans, mortgages, and credit card accounts are covered by credit life insurance, which pays off account balances. Notify these companies immediately.
  
• If you can't find the individual policies among the deceased's papers, look at the checkbook or paycheck stubs for premiums paid.
• Generally, life insurance proceeds are paid directly to the named beneficiary. Most companies offer to pay the benefits in a lump sum or as fixed payments over time.
  
• If the deceased was listed as a beneficiary for your own policy, you will need to change the listed beneficiary.
• Policies on properties and autos should be changed to the survivor or heir's name.
• If medical insurance was formerly obtained through the deceased's employment, find out immediately if you are still covered and for how long. If you are no longer covered, ask about options open to you now.

3. Notify Social Security

• You will need to contact Social Security if the deceased was already receiving Social Security benefits. If a Social Security check arrives after your loved one has died and it is payable to the deceased only, it must be returned. If it is made out to the deceased and surviving spouse jointly, take it to the Social Security office so that it may be stamped "Payable to Survivor."
  
• There is a one-time Death Benefit of $255 on the worker's record, payable to the deceased's widow or minor children.
  
• Survivors Benefits may be available to the surviving spouse, dependent children up to age 18, and in some cases dependent parents (over age 62, you must provide at least half of their support.)

4. Claim Benefits

• Veterans benefits. The VA provides burial benefits, including a grave at a national cemetery, the opening and closing of the grave, government headstone or marker, and burial flag. Cremated remains will also be buried or interred. The deceased may also be eligible for a burial allowance. For information on benefits, including those for surviving spouses, contact the Veterans Administration at 1-800-827-1000. Forms can be found at http://www.va.gov/vaforms/.
  
• Employee benefits may be available; check with the deceased's employer.
• Unions and other professional organizations provide benefits as well.
• Social Security Death Benefit. See above.

5. Begin probate if needed

• Probate is the court-supervised process of paying the deceased's debts and distributing the estate to the rightful beneficiaries. It may take up to a year to complete so attorney may be helpful. Jointly owned property, property in trust, and assets with a designated beneficiary (i.e. life insurance, 401(k), pensions) do not go through the probate process. If the will is relatively few assets, debts, and only one heir, it will probably not require probate.
  
• If the deceased did not have a will, state law determines how the assets and property will be distributed to family members. The court will appoint a personal representative or the executor to manage the deceased's affairs. Contact the probate court in the state where the deceased lived for details.

6. Additional Details

• Advise all creditors in writing of the deceased's death. This includes credit card and loan companies. Remember, some loans, mortgages, and credit card accounts are covered by credit life insurance, which pays off account balances.
• See a tax accountant or lawyer. Federal law often requires that an estate tax return be filed within 9 months of the death. Since tax laws are constantly revised, seek out expert service to find out the full tax liability. The surviving spouse may still file a joint tax return noting the deceased's spouse's death that year. The surviving spouse may also claim the death benefit exclusion on the income tax return.
• Notify banks to change the name to the survivor's only. Ask the bank to release joint bank account funds to you. In some states, joint bank accounts are automatically frozen upon the death of one spouse. If the account is in the deceased's name only, no one may access it until an administrator is appointed.
  
• Notify retirement plan administrators of the deceased's death.
• Change the title on joint assets. Revise your will.
  
• If you have dependent children in college, ask them to visit the financial aid office. They may be eligible for increased aid.
• Motor vehicle. One vehicle is automatically the survivor's property but when the registration expires, you will need to bring a copy of the death certificate, vehicle title certificate, and new insurance form in your name to the Department of Motor Vehicles. They will supply the necessary forms to fill out. Any additional vehicles must go through the estate.
• Stocks, bonds, and investments. Notify the broker or banker of the death and ask for any appropriate forms. Leave decisions about investments for later, if able.
• Keep a record of any bills paid and funds received. If you need extra time paying current bills, notify the company as soon as possible.
• If you have any minor dependents, you must have yourself appointed as custodian of their property, i.e. stocks or bank accounts. The guardian listed in your will should also be updated.
  
• Sale of property. If you are able to postpone decisions about selling, please do. Review all options carefully. Avoid people who want to "make you rich."
  

Updated list of Hospice and Palliative Medicine Blogs

Christian Sinclair has updated the list of Hospice and Palliative Medicine Blogs over at Pallimed. Make sure to check them out, comment often, and let Christian know if you have a blog in that category. I personally would love to hear from hospice social workers, chaplains, and bereavement coordinators.